My sister n law and I both were dx'd with RA around the same time. She with RA/Sjrogens and me with RA/Fibromyalgia. She called me today and said that our doctor had sent her to a specialist to have some neuropathy test run and they came back positive for small nerve vessel damage. They want to give her blood platletts for three days straight to see if this will help. She stated that they told her that it may help with the Sjrogrens and well and the RA. Some of her labs have been a little low and a little high. We are both still new to this ( a little over a year now ) and I am wondering if this infusion helps with RA and Sjrogrens then why aren't we all getting it instead of taking all these DMARDS? She has some tingling and burning in her feet at times so this is what sent her to get the EMG done. I too have tingling in my toes and hands at times, so cannot understand why she is doing this for one and not others? Can anyone with knowledge of this please let me know what it means. Will she have to do it all the time? She is upset about it and I told her I would ask for help from you guys.
Thank you in advance. Again, we are so new at this horrible disease and appreciate any help.
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Ok, I thought you may be as it's my understanding that this isn't generally performed in the UK as after 2 randomized trials it was considered ineffective for RD. Obviously the US ACR differ in this opinion.
Hopefully a US member will see your question & reply. Hope you get the information you need.
Thank you for the info back. Wow, I would think no matter where you are if it is ineffective then it should be that way all across the board instead of putting someone through something needlessly. It would be such a blessing to just have a miracle pill that would just kill this for us all.
Wouldn't that be the most wonderful thing!? That's not to say it isn't effective for other problems, just not RD. I do have a reputable report where I found this info if you would like me to send you the link but it is rather detailed as it's a medical research report.
I would have thought her Rheumy considered it a viable procedure in your s-i-l's case as it'd seem it's quite expensive to perform.
Yes, that you be great. I can pass it on to her. As I said, she also had Sjrogrens as well, so they may be using it more for that than the RA... they just told her it would help with the RD as well. I was going to get hooked up too if so.. They then want to start her on the MTX which we both are VERY scared of. We both take Plaqunil currently, but we both have noticed that it has not been very helpful in the past 3-4 months. I have started hurting in my hips and shoulders symmetrically but my rheumy says that is sounds more like my back issues ( had two back surgeries in 2006 ) rather than RD. She says that RD does not affect the cervical spine. I have read that is questionable. Hard to tell who is right anymore. I have also started hurting more in my fingers, wrist and have recently gotten a nodule on the back of my heel. I am guessing it must be RD related. I go back to her on the 22nd and am fearful that she will want me on the MTX now. What meds do you take? We read so much on the internet about all the terrible side effects of this med like possible forms of cancer that we are both scared to death to take it. So very frustrating. Again, we are so new to this and worry that these DMARD will hurt us more than help us. So thankful for this sight to talk to people who have this same horrid thing that can help us feel a little more at peace. We have even had people tell us.... Oh, they say it shortens your life span 10-15 years. REALLY????? UGH!
There is no evidence at all that RA shortens life span it's a matter of keeping yourself as fit and healthy as you can trying to keep your weight within normal range and keeping cholesterol levels low having regular checks on your eyes. I've just taken part in the BIP trial in the uk and this is what I was told plus keeping an eye on your lungs .
These area few things that have really helped me cutting sugar down to a minimum also wheat I don't have any artificial sweeteners at all as I found my pain levels were worse it's hard to stick to but has really helped me I cook from scratch and don't eat junk. At the moment I feel the trial had helped but time will tell. There are certain DMARDS I refused as they are so toxic but that is a matter of personal preference. I would be happy to help if you send me a private message.
Great if there's new research about RA not affecting lifespan. All the stuff I've found has been old, so before we had the drugs to damp down inflammation as the studies seem to suggest that that was what caused the heart problems and knocked yeArs off us. Do you have any details of it? Would be comforting to know. I do quite a bit in terms of diet and exercise to keep BP and cholesterol low, but good to have some extra motivation to walk that extra mile and refuse the cream cake!
Just to add to Heels' reply, in the UK because it's a state funded health system there is much more control over what docs should do in each particular circumstance. And that's based on assessment of effectiveness. So for example if a treatment isn't 100% effective, and just happens to be quite expensive, then it's only used after everything cheaper has been tried.
The other thing to say is that there are many causes of the tingling sensations you describe, so the reason for it could well be very different in both of you. And sometimes that influences the best treatment. So there is a type of small nerve damage that is more associated with Sjorgens, which could well be what your sis has, whilst yours is something else. And the treatment won't cure it, just help manage it.
But generally I really would suggest you think again about taking DMARDS for your RA. It's a slow disease, but uncontrolled RA is really horrid and once your joints are damaged they can only be repaired through surgery. And the disease also can affect organs such as heart and liver. So although the drugs sound very scary, you need to balance everything up in making your choice as life without them is also very scary. I take methotrexate, plaquenil and sulphasalazine for the RA and have done so for years now with no problems. And because of them I can live a fairly normal life, whereas beforehand I could hardly walk because of pain, swollen joints and exhaustion. So for me they are great drugs!
I agree . I hate taken the drugs ....now on leflumide .....but when I stop taken. Them because I'm scared of the side effects ...........I get terrible pain an swollen joints.
As much as I hate saying it... I thought I was the only one that was scared to take them and was being overdramatic about it, but I am glad to see that even though many of you take them, does not mean you are OK with it, but wanting relief and hopefully remission.
Hoping you feel better on the Leflumide Abbiej55.
Thanks for the reply.
I agree with Polly and also with Jeanrose. I can't tolerate DMARDs so far, including Plaquenil, but I have been very willing to give each one my best shot and not worried unduly about possible side effects because each of us is different in what we can tolerate and how we will be affected positively or negatively.
I have a cousin with primary Sjogrens and she takes nothing but uses alternative therapies such as accupuncture. This is her choice but her shoulders are now both extremely painful and if you touch them accidentally she winces. I think life is too short to refuse all medication personally and both Plaquenil and Methotrexate have kicked my RD into the long grass for a while - but for me personally the price has been too high with both drugs. I research as much as I can and I now know enough about how the remaining DMARDs work to know which one I'm willing to try and which I'm not. I wouldn't rule out Methotrexate if I were you - it is a very effective drug indeed and if I could remotely tolerate it then I would certainly stay on it.
Ps and I've never heard of the infusions suggested for your sister in law but I too get burning soles, tingling and sharp nerve pains in my extremities. I also have dry eyes and have been told that these are a mixture of secondary Raynauds and Sjogrens there is nothing that can be done for these apart from eye drops and vasodilator drug, nifedipine, which I reacted to and had to come off. It is important to check vitamin (D, magnesium and B12 especially) mineral and thyroid levels regularly with these symptoms.
Thanks ladies for all your info back. I think I will go on the MTX and give it a try. Like my husband said... if it does not work well after three months, come off it. I think I read so much on the meds and see the POSSIBLE side effects and it sends me into a tail spin. I have never been one that can tolerate medications well. I was given an injection of meds in my back after two major back surgeries to help with the pain and went into anaphylaxis shock and was in the trauma unit for 12 hours. VERY SCARY! So, since all that has happened and I am one for always being that 1 out of a million... I tend to get very nervous about meds. When you first start the MTX ( and she will be giving it by injections ) I heard that the next day is a wash because you are so sick from it. Then I heard that the day before your next injection, you feel the same. It sort of sounds like you are more laid up sick most of the days. But, think I will give it a try and pray it helps this body feel like or near like it use to.
The "heard" can be as unhelpful as researching too much into side effects. One thing I can say for sure if your Rheumy is starting you on MTX injections you will have less chance or at least fewer side effects than being introduced with tablets as when taken this way it bypasses the stomach. Your Rheumy will also prescribe folic acid to take & should explain how & when to take it, that helps if you do suffer side effects & can be amended accordingly, as can the MTX depending on how your RD reacts after giving it time to see how effective it is for you. You're in the fortunate position of starting MTX subcut, here in the UK we're usually started on tablets (in Spain too where I started treatment). If you convince yourself you'll experience problems it's odds on you'll have them!! Think positive, you never know it could just be the med for you if you can turn your mind set around & you're as fortunate as the many who get benefit from it & have no need to have to try different mixes! I forgot to add, though you Rheumy should have already explained this, you will be closely monitored especially at the start of treatment & will continue to have regular bloods whilst taking it.
You are absolutely right... I need to start thinking this could be my help and I will never know unless I try. I guess I have seen so much cancer in my family and friends that that is what is really holding me back. I lost two fathers, my dad and step dad to cancer and many uncles, aunts and friends that the meet mention that this could cause it, is what is sending me over the edge about it. But, I have to know that God is there watching over me and will see me ( us ) through.
That's awful to see so much cancer in your family, I'm so sorry, but it really won't help to dwell on such things when trying to make an informed decision on a drug which may not result in such things, as I've said before the drug companies have to list everything major or minor found in trials for fear of litigation. It is also part of the r&r's required when a drug is granted a licence to be used for a particular disease or condition. Many other necessary ones but also everyday drugs carry the same warnings yet we take them without ever knowing. Conversely I do appreciate how you feel as I've been there as my dad died of cancer & it was that which made me seriously consider a drug which can have consequences relating to his death but more about how to take it & the possibilities if not taken as prescribed. It was suggested by my Rheumy to help with my osteo status & didn't want to to begin with but reconsidered after research & help from here that it was worth putting that to the back of my mind when I compared the possible consequences of suffering fractures more easily if I didn't take it. I don't literally "see" the benefit of the drug with it being for my bones as I do with MTX I think is what I mean, it's the early hours here & brain fog is starting now!! That was a far harder choice for me to make than the MTX decision which after trying HCQ & that doing little to control my RD I was grateful for the possibility of a combination of DMARDS to ease the pain & help diminish the route problem. The two weren't the answer for me but MTX alone seems to so all's well lol! I've mentioned this before but maybe it'll put a new perspective on it, I call it my antedote. I also think back to when my Nan had nothing but pain killers & horrible smelling ointment to rub on her disfigured, painful & swollen hands & feet & thank everyone responsible for bringing these drugs to the market which control us so well now & there are many. You have to be very unlucky nowadays if there isn't one that works well for you & have to suffer for any length of time.
We all have difficult decisions to make with our problems, especially where meds are concerned but maybe a talk with your Rheumy would be the better choice for you to put your mind completely at ease before making a decision. If you ask him what would he do in your position, which drug would he take, you may get an honest answer, whichever ones he suggests. I've started to use that with my GP's & it does seem if you personalise your question it makes them think harder & give a more in depth reply. Worth a try.
You are far above your years! I too am very sorry about your dad. I have been thinking it over and talked to my husband again, and he himself said that this was a very personal decision to make, but he himself would at least try it. I think I am going to give it a good go and pray it helps this horrible disease and hurts nothing in the process. Yes, my sister who is a RN said that they have to label the meds that way, but most of the time they are rare.... I reminded her hoe "rare" her sister seems to be. She agreed while we laughed together, but she is a bit worried too, but says that they will monitor me close and take me off if anything shows up. I would just pray that there would come a day very soon for us all that there would be a cure for this and we could all live a normal life that we all take for granted at times.
Wishing you well dear one and thank you again for all your help.
Hope to give all my new found friends a good report next week when I return for my visit.
Really only giving my perspective through experience & in reality I've just turned 54, in my head still in my early 20's but some days feel 100!!
It's a huge bonus with your sis being an RN so that will be a comfort whichever meds you take.
Thank you for your good wishes & do let us know how you get on next week & your eventual decision. Have a word with your Rheumy like I said, it may just work. x
I have heard of giving IVIG treatments for low platelets. This is a common treatment for people whose pancreas are attacking platelets (ITP) and the count is low for that reason. I have not heard of IVIG improving symptoms of RD/Sjogrens.
I did research on it myself as well and you are right.. it says it is more to rebuild the platelets that have depleted than anything else, so I am wondering why she told her that it would help with Sjrogrens and RD? Although I did see that it did say something about Sjrogrens too but I cannot remember what it was. I think it said something about Sjrogrens attacking the small vessels and causing the burning/tingling and that it is used to help that too, but again, not sure.
Thank you so much for the encouragement to try MTX. I believe I will give it a try. Do you have to get lab work done quite often? How long was it before you seen a "good" change and does it make you really tired. I have heard that it leaves you very weak and then by the time you are over it, you have to take another.
I'm responding cause I'm in the U.S., but I have never heard of the infusion you are referring to. What I can offer you is my experience and what has worked for me. I was diagnosed this past October so I am fairly new to all this myself. As I usually have both upper and lower digestive problems when I have side effects to meds my rheumatologist put me on injections of Methatrexate. I was scared and really going through a trying time of accepting my diagnosis because it came on so suddenly after knee surgery. I stayed on Mtx for 5 weeks and felt it was not helping at all, so dr changed me to Lefludomide which almost completely did me in, so back I went to the MTX injections. My internist said I had not stayed on the MTX long enough to begin with. I decided I would give it 4 months. It actually took around 3 months before I could walk without a cane, get in and out of shower, use my hands in the morning, etc. The MTX is not without side effects, but my rheumatologist had me do injections half and half, two times a week instead all in one injection. It made a big difference. I notice some weeks I am extremely tired days after injections, but some weeks I am not. I take 20 mg. a week total which is the same as eight 2.5 mg pills. As we all know this is a serious med, but I will say it has given me a life! I was in a horrible way and could do little of nothing for myself. As for the tingling you and your sister in law are experiencing it does sound like some kind of neuropathy. I take a lot of vitamins, one being 50mg of B6 a day and it is for nerves- the tingling and burning sensation, not anxiety type issues. You might ask your dr about B6 as a supplement. Not to scare you or add to your frustration, but I have heard Type 2 Diabetes can cause tingling and nerve problems in feet. You could have your dr check you for that, also if you haven't been checked already. That was a major concern for me because of the steriods( Predsione) I took and am taking. I am in process of tapering off Pred, but that's another story. I have also attempted to start Enbrel, but have had other health issues and am not on that presently. Of the people I know or have met here in the states with RA they are all on MTX and some kind of biologic and anti inflammatory. One is my niece. She hasn't had any proems with MTX at all. Good luck to you. I have a friend who has fibromyalgia and she has periods of awful pain.
Hello Susie, so nice to talk to you here in the US. I have never heard of the infusion either until my sister n law called me the other day. I did research it and it is actually used. The UK does not use it because it showed ineffective. You have been very encouraging to me about the MTX. I too have many tummy issues, so my sister who is a RN said to make sure they give me the injections verses the oral tabs. I also have had many bad reactions to meds and am a bit worried about it. Had an anaphylaxis reaction to a steroid shot given me in my back for pain management and sent me to the trauma unit for 12 hours. Talk about scaring you to death. I must add that I too went through and still go through days having a very hard time dealing with the dx's of this disease. How long did you take the MTX before noticing any change in your pain levels and better joint mobility as well as stiffness? You stated that you are tired many days after the injection, but if you take it once a week, by the time you are getting over it- it is time to take again, so when is there any "good' days? I tell you , this is so tormenting for me. I just turned 52 and feel like I am 102 and this is my death sentence. I just pray that I can get through the fear of these meds and be able to feel human again and enjoy my 22 year old son and husband. Do you feel that you made the right decision re the MTX? They are thinking the the tingling is in fact coming from my two back surgeries that left me with nerve damage. I had three infusions done in levels 3,4, and 5 in my back which took 10 hours in surgery to do. Three days later I had to go back into surgery because part of the bone they used to fuse fell and was pinching a nerve off to my right leg..... I would have let them cut it off the pain was so bad. That surgery was 5 hours long, so lots of nerve damage from that. I was given a glucose test that checked your blood levels for three months back and they said that there was no diabetes, thank God. Yes, the fibromyalgia is very painful at times, but here is the kicker.... my rheumy thinks it is all in your head!!!!!! I have had two of my other doctors tell me that they are literally surprised that a rheumy would even think that. Go figure! So, there is no dealing with her on that area. I am sure she would change her mind if she ever experienced it herself.
Thank you so very much for listening and I look forward to hearing back from you. This is still so new to me as well.
Hi Lois, so glad to hear from you. Sounds like you have really had a rough time and my heart goes out to you. I had knee surgery for a meniscus tear and never got over it. Probably was RA beginning, but it spread fast and rheumatologist calls mine "sudden severe onset" and that pretty much describes it. I was scared to death of the MTX and was also put on Prednisone 15 to 20 mg at first, but I was in terrible pain and pretty much crippled so I was willing to do anything or take anything. The only good thing was I was very easy for drs to diagnose cause I was pretty much "a classic case". R Factor positive, antiCCP strong positive, CRP very high, etc. all joints involved were both sides, and the stiffness actually lasted for hours in AM. I literally could only go from bed to couch to toilet to kitchen for 3 months in the winter due to getting a bad case of pneumonia and being pulled off MTX for 2 weeks by my internist. And that was pretty much all I could do. Some days I laid in bed and cried due to the horrible pain and sick feeling. I actually saw for myself how sick I was and realized the MTX was actually helping a lot more than I thought. Rheumy had me at first on 15 mg of MTX- this was in the fall on addition to the Pred. Like I said I didn't think it was helping and felt so tired day after injection she changed me over to Lefludimide . This is just my experience cause some people Take Lefludimide without any problem, but I immediately became sick on it (about 4th or 5th day)with vomiting, uncontrollable diarrhea, and horrible nausea- I was on Leflludimide 2 weeks and knew after one week I needed to go back to MTX injections. I went back on MTX for 2 weeks andwas still at 15 mg then came down with pneumonia and had to stop it. I was all over the place with meds. In January Rheumy started MTX back at 20mg wkly. I had decided I would give it 4 months and see if I could get through side effects and see if really would help. I have not had
any problems with blood work so far. I started having a rapid heart beat at different timesduring week or day on 20 mg. Sometimes it would wake me during night just pounding. I also could not do much of anything day after injection -remember just staying in bed feeling completely depleted. At that time Rheumy told me to do injections 2 times a week , half and half, 10mg and 10 mg- half one night and half the next night. It was amazing how much it helped- not as tired , heart is normal. It actually took from January to middle of March to see major improvements. I am retired and single , but was working 2 part time jobs when this disease hit me. I had to quit both. It's hard to accept how quickly your life can change- for me MTX gave me my life back. The side effects can be bothersome, but they are tolerable. I would go as far to say I am addicted to MTX - just joking! Usually if I have problems with meds it shows with digestive problems and since DMARDs seem to cause those kinds of problems the MTX hasproven to be the best for me, absolutely. I am walking a half mile each day and while that may not sound like a lot to most people, for me it seems amazing when 6 months ago I could hardly get from bed to toilet. My friend who has Fibromalgia suffers badly, but she says it's mostly in cold weather. I'm not sure what meds she takes so I don't have input for that. My advice is to go with the MTX- it takes a while to see improvement. All problems I have had with the MTX, I grin and bear it- You will probably need help with injections at first- my pharmacist actually loaded them and injected them for me the first month until I was comfortable doing them. And make sure your dr. shows you on syringe how much you are to take- syringes I use I load to 4ml each injection which I his 10 mg and do it 2 nights a week. Hope you decide what you personally feel is the best direction to go. It is very hard to accept having this disease, but think of how far medicine has come and the quality of life these drugs have
Hi Lois, so glad to hear from you. Sounds like you have really had a rough time and my heart goes out to you. I had knee surgery for a meniscus tear and never got over it. Probably was RA beginning, but it spread fast and rheumatologist calls mine "sudden severe onset" and that pretty much describes it. I was scared to death of the MTX and was also put on Prednisone 15 to 20 mg at first, but I was in terrible pain and pretty much crippled so I was willing to do anything or take anything. The only good thing was I was very easy for drs to diagnose cause I was pretty much "a classic case". R Factor positive, antiCCP strong positive, CRP very high, etc. all joints involved were both sides, and the stiffness actually lasted for hours in AM. I literally could only go from bed to couch to toilet to kitchen for 3 months in the winter due to getting a bad case of pneumonia and being pulled off MTX for 2 weeks by my internist. And that was pretty much all I could do. Some days I laid in bed and cried due to the horrible pain and sick feeling. I actually saw for myself how sick I was and realized the MTX was actually helping a lot more than I thought. Rheumy had me at first on 15 mg of MTX- this was in the fall on addition to the Pred. Like I said I didn't think it was helping and felt so tired day after injection she changed me over to Lefludimide . This is just my experience cause some people Take Lefludimide without any problem, but I immediately became sick on it (about 4th or 5th day)with vomiting, uncontrollable diarrhea, and horrible nausea- I was on Leflludimide 2 weeks and knew after one week I needed to go back to MTX injections. I went back on MTX for 2 weeks andwas still at 15 mg then came down with pneumonia and had to stop it. I was all over the place with meds. In January Rheumy started MTX back at 20mg wkly. I had decided I would give it 4 months and see if I could get through side effects and see if really would help. I have not had
any problems with blood work so far. I started having a rapid heart beat at different timesduring week or day on 20 mg. Sometimes it would wake me during night just pounding. I also could not do much of anything day after injection -remember just staying in bed feeling completely depleted. At that time Rheumy told me to do injections 2 times a week , half and half, 10mg and 10 mg- half one night and half the next night. It was amazing how much it helped- not as tired , heart is normal. It actually took from January to middle of March to see major improvements. I am retired and single , but was working 2 part time jobs when this disease hit me. I had to quit both. It's hard to accept how quickly your life can change- for me MTX gave me my life back. The side effects can be bothersome, but they are tolerable. I would go as far to say I am addicted to MTX - just joking! Usually if I have problems with meds it shows with digestive problems and since DMARDs seem to cause those kinds of problems the MTX hasproven to be the best for me, absolutely. I am walking a half mile each day and while that may not sound like a lot to most people, for me it seems amazing when 6 months ago I could hardly get from bed to toilet. My friend who has Fibromalgia suffers badly, but she says it's mostly in cold weather. I'm not sure what meds she takes so I don't have input for that. My advice is to go with the MTX- it takes a while to see improvement. All problems I have had with the MTX, I grin and bear it- You will probably need help with injections at first- my pharmacist actually loaded them and injected them for me the first month until I was comfortable doing them. And make sure your dr. shows you on syringe how much you are to take- syringes I use I load to 4ml each injection which I his 10 mg and do it 2 nights a week. Hope you decide what you personally feel is the best direction to go. It is very hard to accept having this disease, but think of how far medicine has come and the quality of life these drugs have
Dearest Susie, this was very touching for me that you took the time to send this reply back to help me feel better or, more at east about the MTX. I must add something that I have not yet related to all my new found friends. When I was 13 years old, I was in a terrible, terrible house fire that took the life of my best friend ( she was 14 ). I was burnt on my arms with 3rd degree burns and stayed in the Washington DC burn unit for over three months. I had 36 surgeries and a year and half of therapy after coming out. Since that time, I have been very afraid of many things hurting me. I was told that the trauma from this at age 13 certainly set the tone for the rest of my life. They told me I was a fighter, or I would never have survived that terrible event in my life. I was in a coma for three weeks and my heart stopped two times. God had a plan for me I think. My precious husband tells me it was to take care of him and our son. So, maybe I should have shared this with my other friends here so they would understand more of why I fear these things so much I guess. But, I want to be around to see my son married and grow old with my husband and become a grandmother someday, so I want to at least say I tried.
Thank you again for all the support and I pray that this will help me as it has you. I do worry about the horrible tiredness... I was like that before the Plaqunil. I would go from one chair to the next not knowing what was wrong. Doctor after doctor kept thinking I was depressed. Don't you just love those ones? Seen a GOOD doctor who said... Lois, there is something going on. Lets get you checked out by a rheumy. She did lots of blood work and called me two days later and asked me to come in. My husband went with me and she said I had fibromyalgia, but the serious one was RD. I had no idea it was an autoimmune disease at all... thought as many people still do... oh, you have arthritis. No so at all!!! So, that is when it really kicked in that I was sick as I could tell already. So now I want to get better and move on with my family. So thankful for you and my other friends on this site.
Oh bless you Lois. I was at first a little cross you hadn't explained all then thought about it & my word you've every reason in the world to fear things which may harm you. This makes the decision so much more difficult for you, I understand now, yet would still emphasize that if after giving it chance you're still not totally comfortable with MTX there are options, maybe not as efficient at controlling your RD but will nonetheless.
If you explain to your Rheumy your deep seated issues as you have here I'm sure he'll do all he can to reassure you. x
Thank you! I think I will go ahead and give it a try and pray that this will me my miracle med from God and no more bad things happening to me. My biggest fear I guess is thinking negative all the time that there is always something that is going to happen to me. But, I need to start looking at ... GOOD things will START happening to me! I pray this will help me. My knees have been terrible today as well as wrist and fingers, so I just want to feel well and enjoy my family without the fear. I am sorry, did you say you were still on the MTX or off now?
Thank you so much for your support and yes, I will talk to my rheumy more about my concerns and hopefully she will work with me and try to assure me rather than say.... EVERYTHING has side effects... I know that already.
With your attitude you stand every chance of reacting well Lois. If you have a positive stance on future better health I'm convinced it helps. Fear is the thing which can hold us back, for whatever reason. I really hope you can overcome what will be a big step considering & you notice a big difference once it's doing its job.
I still take MTX 5 years on after another DMARD & combination of the two weren't working right for me so I switched just to MTX tablets & then changed to injections 4 years ago. I had a 3 month enforced break from all my meds when we returned to the UK after 11 years living abroad whilst I waited for an appointment with a Rheumy to represcribe them & that confirmed how well MTX works for me. I was if I'd never had anything after 6 to 7 weeks & I had to have my wedding ring cut off as it was cutting off the blood supply in my finger & though I have a little swelling at the mo because of a med change I'm so well controlled compared to having no meds. I see my Rheumy a week tomorrow so hope my NSAID can be replaced as I can only take it when necessary at the moment & really need something daily to keep that swelling at bay.
We all care & support one another on here, as I guess you're feeling with the response you've had. Hope once you're over this hurdle & feeling so much better you'll be able to do as we have & support other newcomers with your experiences of your new med, whichever it is!
Again, thank you. I am trying my best to turn it around and believe that this WILL be the help for me to feel good again. I do have a question though. You said that the MTX has really helped you, but why are you still having the swelling? Does the MTX not control that part too? I know I can ask the dr. but sometimes it is best to get it first hand since they do not take it themselves. Also, I was thinking about asking if I can take it in two injections per week ( one day 1/2 and the next day 1/2 ) to see if it may eliminate nausea, fatigue etc. Do you recommend that or does that not work well? I just do not want to take it in two doses if it will cause me to be wiped out two days instead of one. Just trying to find the best route.
Dear Lois! My goodness! Of course with all you have been through in your life you have every right to be hesitant- you must surely be a very strong and courageous lady ! You will get through this; you will find a medicine you can tolerate. It really does take time and what drs don't seem to understand is of course, we will have periods of depression dealing with horrible pain and also not knowing exactly what is wrong with us. I don't know if any dr would agree , but I feel some of the tingling and neuropathy issues go along with RA/RD. Keep us informed on how you are doing!
Thank you Susie. I do not know if I am strong or courageous at all. It has been a battle for me all my life and yet, here comes another. But, I have to say... I believe in God and He must want me around for something. I too pray that this step in faith to try the MTX will work for me. I will keep all informed as to what the rheumy says on the 22nd. Does anyone know if it is best to take 1/2 and 1/2 of the injections to cause less side effects, ie nausea, tiredness etc? I read that some people will take 1/2 one day and the other half the next day. I just don't want to feel so tired for days and then just to take another, or is it best to just take the full dose and get it over with. I am so thankful for you ladies I cannot tell you.
Hey Dear! I would think your Rheumy would start you on injecting once a week. It never even occurred to me when I started 20mg a week and began really feeling lousy from injection that 2 times a week halving the dose would work and save me and keep me from givingup on it . I was amazed that something so simple could help so much. I also think my Rheumy knew my options were limited due to the fact that pill wise, my digestive system could not handle DMARDS. I am getting ready to add Enbrel and honestly am more fearful of that than MTX. My advice is also to know that the disease itself leaves one exhausted and I honestly can't say if the fatigue wasn't as much the active disease as the MTX. Just make sure you are shown how to loadsyringes with correct dosage. Thereby be preloaded syringes here in the US not sure
Why are you having to add the Enbrel? The way my rheumy talked she would keep me on the 400mg of Plaqunil along with the MTX. Why leave me on something that does not work? I will be sure and ask her why of course, but this is all so confusing to me. Yes, since I have had this my energy levels have gone so low. I hate it. So are you still on the MTX? I see you say you gave up on it, but I think I believe I read you went back on it a little later. Well I am going to ask about twice a week verses the one.. she may not let me but I will try. Yes, we have the loaded syringes here.
Well, you may know more than I do. I lhave always loaded syringes myself. And now I have found out in England there is a pen and may even be available in U.S. I have just gone by what my rheumatologist prescribed. Yes, I am on MTX. The RA/RD was so bad in January she wanted to add a biologic . Other health issues came up to prevent me from starting the Enbrel and by the time I was cleared to start Enbrel I had greatly improved on MTX alone. Well, I say alone , but have been and still on low dose of Pred. I actually started Enbrel(had 2 injections), then came down with upper respiratory infection and was pulled off and way too long to tell. I believe Rheumatologist's objective is to get me on Enbrel or other biologic and lower MTX dosage for maximum effectiveness. I don't know that many people here in U.S. With RD, but they are all on MTX along with a biologic plus an anti inflammatory. Dr has never suggested adding another DMARD along with the MTX as is done in your case and in England. I will ask her when I go back to her.
I am in Calif and was started on Plaqunil in Dec 2013 and MTX in Jan 2014 and Humira in May. Only side affect was constipation from the plaq. Other than that I'm back to playing tennis after 7 months of hardly being able to walk. Also taking mega doses of omegas 3&6, vits C,D,E,Bs, as I read there have been positive test results and believe it helps immune system as the tocic drugs are compromising it. Also started Hot yoga 3xs a week which really got my joint mobility back moving again. Hope all goes sell for you.
Hello fellow American!!! I have been speaking with some very nice UK people and some of their meds are a bit different than ours here. I too was put on the Plaqunil and have been on it since April 2013. For the past 3 months something has seemed to have changed. I was able to do some hand exercises in the mornings when I woke when my hands were so stiff and it would go away in about 30 minutes. Then I woke up and my fingers, wrist, shoulders, hips, ankles and sometimes knees were all hurting and stiff. My hands and wrist are lasting most of the day long now. I have also noticed my ankles more now and sometimes get a tingling in my toes on my left foot. I had two back surgeries in 2006 and my rheumy keeps saying that the hip pain which is ALWAYS on both sides at the same time as well as both shoulders are coming from my back. She refuses to think it is the RA. I cannot seem to get my rheumy or my pain management doctors to FIGURE it out. My pain management doctors say... it is your RA. Really??? So, I do feel she will highly suggest the MTX. I do not do meds well at all, so I worry about me tolerating them too. My sister who is a RN said if I decided to go with the MTX to ask for the injections because they seem to cause less side effects. Just scared of all the meds..... they seem so toxic. Did your rheumy put you on the supplements or did you do them yourself? Again, my rheumy is not that helpful in directing me what is BEST for me to make sure I get what I need to help with good immune support.
Hi Proudmom, and everyone! I`m new to this site! And was checking out some of the postings! I read your post about taking Methotrexate! I just thought I would share my experience while taking it! I had taken it for almost a year , I took 5 pills of 2.5 mgs once a week at the beginning along with 10mgs of prednison , then increased the Methotrexate to 7 pills of 2.5 mgs after a while! I also took Folic acid to help with the side effects! Stopped the prednison after a while once the Methotrexate had time to start working!
It did help with a lot with my RA pain and stiffness , but I did have problems with feeling very tired and no energy . Some stomach upset the day I took it also! Then at the end of April I had to stop because it was effecting my liver! While having to be off it for over a month till my liver recovered I started feeling better as far as my energy and tiredness, ! Once my liver was normal again my doc put me on Leflunonide to try.
In a few weeks on it I started feeling the same, very tired and no energy again. So my doc ran some blood tests and he said that I have Epstein -Barr Virus. So now I'm having to go off the Leflunonide so my body can fight it off! I looked up on the internet and found out that both drugs have been known to bring on the virus! For now I'm waiting a month to get more blood test to see if it is gone. Then I'm not sure what my doctor wants to do. Or if I want to take anything else! Right now I'm just taking a little predisone and Tramadol for pain .
Everyone is different and meds effect everyone differently, and each med is different. So we don't know until we try them! I didn't want to go on them at all, but when your pain is so bad that you can hardly get out of a chair or walk. I had to do something to try and get better! So you have to decide if your pain is bad enough that you feel you need to try something to get better!! I wish you good luck with everything , and hope you get to feeling better!
Thank you very much for your reply re MTX. Yes, each person is unique and experience things differently and I guess my whole thing about trying it and being afraid of any new drug is that I have had so many, many reactions to meds all my life, one being anaphylaxis that nearly killed me; that the thought of what it might do is what holds me back. But, the pain is getting worse and I know it is getting more aggressive. The Plaqunil helped me regain my energy levels back, but has stopped working I am guessing. It is so tough knowing what to do.
Hi gingeq I could have wrote your story myself. Scared of the lefluemide I am now on but came of them myself for three months due to high liver function test. Did you drink any alcohol when on meth or lef. When I stopped taken the lefluemide I woke one morning and couldn't get up from the bed. I could hardly walk and was in terrible pain, it was like I had broke both my legs and not had them treated. I was also very depressed. Now I know I have to take the drugs an watch my alcohol consumption so that my liver tests are ok. Wishing you well.
I'm not totally controlled at the mo. I used to take a daily dose of etotricoxib (NSAID COX-2 inhibitor) but as I've been taking it some time now & because of concerns of possible cardiovascular issues when taking it long term the NICE guideline (The National Institute for Health and Care Excellence, like your FDA) now suggests it is only given short term & although I have no problems I can only take it when I really need it until I see my Rheumy when I hope she'll prescribe another NSAID which will work equally well for me. This guideline also applies for other COX-2 meds I think but she'll no doubt prescribe the safest option she can. MTX does help with both pain & swelling but because I only take etoricoxib on a prn basis I am now showing signs of swelling when I normally show very little. Meantime I've been rubbing an ibuprofen based gel on my joints so I can avoid taking it as often as I really need at the mo.
I inject my MTX in one go, always have & I'm fine doing that. Some people if they're struggling with side-effects, particularly when on tablets, split the dose, as I did by taking 2 at breakfast, 2 at lunchtime & 2 at dinnertime. This way you don't overload your body as much & it helps with side effects. It makes sense really. Same for injections, some people find it helps if they can split that though think that's less the norm as generally side effects are fewer. The folic acid will help if you're unfortunate enough to suffer any, most of us do I'm afraid though it can depend on how you react to drugs & this one is no different. Few we need to take are without any as I'm sure you realise. I can cope with mine as I only feel more tired & a little off my food the day after injecting & compared to not having it at all I find that's a small price to pay. You'll learn to rest when necessary if it does make you feel iffy, that way you can cope better & enjoy the rest of the week.
Hope this helps. Off to bed soon as I took my antedote yesterday & a little washed out now as I got a little gardening done today as it's been gorgeous here & overdone it for a Thursday. I should know better but the warmth of the sun was lovely so kept me moving & now I'm feeling it. We never learn do we lol!?
Hi Lois. I re found this thread when searching IVIG and RA. I have recently had the severe burn/ chill pain that is progressing in my feet, legs, hands and arms diagnosed as an immune mediated small fiber neuropathy.
Reading this thread I realise there are some innacuracies and thought I would Assess these in case others read this interesting thread.
The UK most certainly does use IVIG for people with immune mediated neuropathies - including SJogren's if it is shown to be causing a progressive neuropathy. It is an extremely expensive therapy so is only used by the NHS if other all options have been tried first.
But there are demylienating types of autoimmune disease for which IVIG is the first line treatment - including MMN, CIDP and sometimes MS and Sjogrens too. For some it is extremely effective, indeed a lifeline.
If your sister in law had positive autoantibodies for Sjogrens or immunoglobulins then your rheumy may well have felt was important to offer her something to stop the neuropathy advancing. It is no different in approach to when a rheumy might decide that some joint pain represents more erosive disease than it does for others, despite similar symptoms - based on blood results and MRIs or even in my case, a lumbar puncture.
If your sister in law did decide to try the infusions of IVIG I would be most interested to know if this has worked well for her?
I hope you're doing well with MTX once you bravely overcame your very understandable fears?
Hi twitchytoes- She did NOT do the infusion out of fear. She said she still has the same symptoms from time to time. She was also on the MTX (12.5MG) injections but has also stopped them as of 8 weeks ago. She took them for 12 weeks and said she could not see any change and stopped them on her own. She has not told the rheumy ( we both see the same one ).
I am unfortunately not seeing much of a change on the MTX. This sunday will be my 12th week on 12.5mg and I am still getting the morning swelling in my fingers and sometimes ankles and feet. Of course I still have the morning stiffness as well until I get moving around. My wrist seem to be hurting more than usual as well.
When I first started on the MTX she started me on .3ml and every two weeks I was to up it until I got to .5ml which is what I have been on for near 8 full weeks. My sister who is a RN here in the States said that maybe I should give it the full 12 weeks on the 12.5mg and see if it will build up the therapeutic level. I am willing to do that, but notice that I seem to be getting a little more nauseated now that I am on the .5. I did not get any at all on the lower dose. It will last for a few days and not too bad. I also get a mild headache which someone told me was also normal.
My labs seem to come back good each time and I am due to go back Monday for more lab works.
If you have any advice, I would love to hear it. I want it to work so bad and as you know I was scared awful at first. I did ask my rheumy if she was going to up it if not, and she said... no. She said she was very conservative with this medication and would not go up any higher. It is not just for me, but for all her patients. ??
Thanks and hope you feel better soon.
Lois
That's a shame she didn't try these infusions out of fear Lois - they are only done as an inpatient so she would have been well monitored. I do hope nothing that was said in this thread put her off.
I know someone who has a very rare type of small fiber neuropathy as part of her Sjogrens and these infusions are a lifeline for her - keep her out of a wheelchair. I also sat with three people on a neuro ward recently who were all getting their monthly infusions and all said they mean that they can get on with relatively normal lives.
The rheumy wouldn't have suggested it if she didn't think it would help your sister in law - especially as she's a cautious type of person.
Glad you are sticking with the MTX. Sometimes it can cause nausea even at a low dose but it is a brilliant drug. It has chased my RA into the long grass - but only the arthritis side of things - the rest of the autoimmune disease has come back to plague me since I stopped taking injecting it. However I couldn't tolerate it anymore after 2 years but I was on a considerably higher dose than you are.
Take care and I hope it works out for you. Twitchy
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