At the early stage of my RA, my fingers were all curved in. I could not put them straight. The GP said if I did not get treatment immediately, my fingers would get worse.
During my treatment, I used to force my fingers to straighten and sat on them as much as I could. After many months, I finally could straighten my fingers but they were still not flexible yet as I had to force to straighten them and force to bend them. However, I was happy with the great improvement. I then continue to sit on them and bent them by forcing them to close against floor or chair.
In addition, I also bent my fingers outwards so that they could be curved outward to be more flexible as normal. To close them all together, it took me months too by forcing them together using many ways.
As you can see now, my fingers are very flexible. The important point here is, never give up and find ways to work on your joints. You will see result after months of trying. I hope my experience can help someone who is facing the same problem.
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Amy_Lee
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Thank you Amy_Lee. We all know that we should never give up and that it will take time for results to show. But it's worth the effort. To know that one has persevered and achieved a health benefit just adds to the feeling of well being.
Only those whose joints are still in good order can the joints back into the normal position like mine. I do my best to share, I hope those who have similar problem can come across and follow.
Interesting. Thanks for sharing. My biggest fear is not being able to play guitar because of RA. It's a horrible disease that seems about impossible to control. It's good to see you fighting back against it.
Do not give up first. Get treatment early, you will be fine. Unfortunately, many people delay treatment and skip the poisonous mtx, hence ended with joints damaged then it will be irreversible.
Yes it is a horrible disease but we have to be braved to face it and fight back. When was you diagnosed RA? How is your condition?
Thanks Amy_Lee. Yeah, so far it's been LDN, Prednisone, MTX, and now Embrell. Nothing works. Still waiting. Constant horrible pain. On a mix of drugs. Diagnosed a few months ago, but have been in agony for years. No drastic visible damage but x-rays have showed damage to bones.
How long did it take you to find some relief? How long have you had RA? Thanks.
Methotrexate took more than 4 months to work. Work means the pain starts to reduce. It does not go off overnight. It reduces slowly. I could not even walk properly because my ankles and knees did not know how to balance my body anymore. It took me about a year to start to get back the balance.
Do give yourself sometimes for the medicines to work on you. Also, do keep a record using excel to tract your blood work so that you can monitor your condition well too.
In addition, record down your feeling if there is any change and what you eat too. Bring along the record when you see your rheumy. That will give him or her a good idea of your performance too.
Then the pain finally went off after about 1 1/2 year's treatment for me. I do not really have any more pain after that but I still can feel the different in my joints, they are weaker as compare to what I was before.
Amy_Lee Interesting. It seems that most people start to feel relief from Methotrexate within the 1-2 month range. I've always assumed the 4-6 month range was for rare exceptions, and something related to the insurance companies pressuring the drug companies to avoid biologics as long as possible.
I was on Methotrexate for 4 months. Maybe I should have given it a bit longer. I pressured my RA doctor into going the route of the biologic because I have a massive anti-ccp level of 2,600, which apparently can cause more destructive damage, and according to studies I've seen; folks who are seropositive do better on biologics.
I was experiencing swelling in my shins, ankles and fee with the MX... almost like a clay that I could push around. Now on the Embrell the same areas of my body are swelling worse (looks like I've been stun by a bunch of bees). Though that seems to be minimizing some. Gets worse when standing.
I understand that these drugs don't work overnight. I guess I'm somewhat impatient because I've been in chronic pain for 15 years, though the RA pain maybe for 1/2 that. I was surprised the prednisone didn't work at all. The LDN didn't work at all.
My pain has been excruciating, though it sounds like you've experienced worse with your inability to walk. Regarding the recording of diet, etc... I tried that for a bit when I was doing the elimination diets, but I found diet didn't help me feel any better. I constantly feel the same (horrible). So I saw no reason to keep marking 8/10 on the pain scale every day.
Now I just eat whatever because I'm tired of losing weight. I'm 6'3" and weight 148 lbs. The diets get me down even lower and don't offer any relief. I do though try to avoid certain things, I don't drink, and I drink lots of water. The whole turmeric paste, gluten free, paleo thing didn't work for me. It just drained my bank account, required time I didn't have, and stressed me out.
Also have tried chiropractic, nutritional muscle testing, cupping, accupuncture, and everything else under the sun including pain creams and devices. I've come to find it's all a waste of money and accept the fact that I'm dependent on the drugs to hopefully eventually work.
Well, enough of my whining. If you have any questions you have in mind, maybe I can help. I've spent dozens and dozens of hours trying to understand these many things, so maybe I have some info I can share as well.
Anyway... thanks for your advice, I appreciate it. And thanks for sharing your inspiring experience with making your fingers straighter again. That's amazing.
Reading through your story here, I am so so sorry for you. I think you had not given enough time for mtx to work on you.
At the very beginning, I was on mtx and prednisolone. My rheumy told me that prednisolone was just a bridge to reduce inflammation and pain while waiting for mtx to kick in. I was told to slowly stop prednisolone after a year.
While having both within the year, I was still in great pain but reducing and once I asked my rheumy how long the pain could go off? She told me that it depended on each individual response and I needed to be patient.
6 months after the treatment, my daughter took me to an inland nearby. That was my first trip out after I was sick. While getting on to a boat, she and my friend were trying to help me over hence they hold my hands. When they touched me, I was screaming away in pain. I told them to just stand still and i would hold them to move over. In that way I knew how to minimize the pain.
That was after 6 months of treatment with mtx and prednisolone. Yes, my whole body was swallon. I felt I could explore any time then. But then after some months, my body weight drop tremendously to 38 kg. That was when the swell went off and I was left with skin and bone. I knew mtx and prednisolone started to work well on me but I was so worried about my weight. I could still eat as normal though.
Slowly, I regained my weight back to normal and a year after the treatment, I could walk more stable and the pain level reduce tremendously. My rheumy told me to slowly stop prednisolone since the pain was reduced so much then. But then, I still could not sit on the floor and could not squat down yet, my hands were still very weak. I was still working on my legs to bend them to squat down and sit on the floor. At the same time, I was still working on my hands using thera bands to build the strength.
I started to be able to sit on the floor and squat down after about 1 1/2 year of exercises. It really took a long time for me to get back to normal. I was very patient and obedient and I finally achieve that.
Only God knows the process takes so long. I saw many RA patients around here could not take the pain and thought that mtx and prednisolone were not helpful then they went for other means. Finally many of them had ended joints damaged and joints replacement. After many years, the pain was still hunting them and the damaged could not be undone. I am very sorry for them and I am bless to be able to get back to normal life really.
Thank you for offering your help, below are my questions if you can share what you know. I have been searching online but I want to see if you have got any answers different from what I have got as second opinion: -
1. Is there a way to keep remission permanent?
2. If no, what can I do to help myself to maintain my remission stage?
3. Since I am RF and CCP negative, can I get off mtx one day? I am now with mtx and Arava. Mtx has been reduced from 8 to 4 tablets now.
Amy_Lee Wow!... You've been through hell. I applaud your fighting spirit.
When you say that you've seen folks giving up on the MTX and going other routes and ending up with damage, it has me a bit concerned. I was under the impression based on my research, that biologics were pretty equivalent in effectiveness to MTX when it comes to halting or slowing the progression of RA.
And for folks like myself who are highly seropositive, biologics tend to be more highly recommended. Since I've already stopped the MTX (a month ago) and been on Embrell for almost 4 weeks, I don't really see the point in re-starting MTX. Unless maybe I was put on both drugs at the same time. That seems like a lot of stress on the liver however.
MY doctors currently have me on Embrell, Lyrica, Oxicodone and Oxicontin. I understand the risks of taking pain meds, but without them I am unable to function or work. The pain is just too extreme. I'd rather die than continue to endure that. It's not living.
While the pain meds only offer a slight reduction in pain, in my mind they are necessary until I can find an RA medication that starts working.
I will take your advice and give the drugs more time. If it weren't for the biologic being a better choice for reducing chance of more bone damage for seropositive RA sufferers, I would have stuck with the MTX a bit longer.
In regards to your questions:
1) From my research, length of remission varies from person to person. They don't seem to know why some folks have long periods of remission and long standing success on a single drug, while others need to switch drugs every couple of years. According to Clint Paddison (Paddison Program), he and others have experienced permanent remission from their RA by sticking strictly to his program and dietary recommendations.
I personally am skeptical of many "healed" claims due to lack of scientific evidence, and from personal experience of having no luck with dietary changes. I also have a tough time trusting many claims that are tied to profit. And there is also the possibility that someone didn't actually have RA, but instead food intolerances that were remedied through the diet changes.
With that said, it can't hurt to give the strict diet approach a try if you haven't. Clint seems like an honest enough of a guy with true intentions, but who knows.
2) See above.
3) I'm sorry, I am not well informed enough to help with this one. Though it is my understanding that if all blood test markers are showing negative for a standing amount of time, and symptoms such as inflammation / pain / bone damage have halted, you can get off of the drugs. And if symptoms re-appear you go back on them. I believe that is what my first RA doctor told me when I asked the same question.
With regard to biologics treatment, it is very expensive here and some of them have started on that. It is not introduced until a few years back but not popular then. Unfortunately, many of them already have a lot of joints replacement done but still suffer in pain, therefore they have no choice but able to afford that, they go for it.
I did ask one of the rheumy on biologics, he said that normally over here they will not start with biologics unless other DMARDs have been exhausted. He told me that he would not advise me to go for it because my condition is good and I could accept mtx well.
As for other natural remedy, I do really trust them. My rheumy did mention if my condition continue to be good, she will take me off mtx in another six months. I am not in any meal plan and eat normal still until today. I would like to see how it goes.
At this moment, I will continue to do my research to see what I can find. If you have to come across any good and new development, kindly do share with me please.
Amy_Lee Yes, biologics are very pricey. Luckily my insurance is currently covering the entire amount. I can't complain there. That may change in the future however. If it does, i'll have to go on something else.
Yes, I will try to remember to let you know of any new developments I may hear about. I suggest looking into LDN if you haven't yet. It seems to offer good results with less apparent side effects.
I was on LDN for 3 or 4 months. While I experienced no side effects, I also experienced no relief. Though, like everything else, it can take 6 months. Instead of suppressing the immune system, it helps regulate it. Seems much safer to me. You can learn more on Google. There is also a very helpful Facebook group called something like "Got Endorphines Low Dose Naltrexone".
I have yet to understand what LDN is. Just gone through the article on LDN, do you think it is safe for RA patient to use this?
LDN have an immune-regulating mechanism, but it also appears to reduce central nervous system inflammation. The bottom line is it boosts the immune system so the body can activate it’s own natutal defense system.
Yeah... in short... a lot of people love LDN because it seems much safer than the more toxic alternatives. LDN has helped many people with a wide spectrum of ailments. The problem is doctors won't get behind it because it's not FDA approved for RA, and because there haven't been many extensive studies yet. It is an FDA approved drug for other stuff though, and there are doctors who have had much success with their patients who have gone on LDN.
There are certain doctors who will prescribe it, but they are hard to find. I had to find an online doctor to prescribe it for me.
I suggest doing much research on it if it is something you're interested in. There are Youtube videos and forums with tens of thousands of users willing to help and share info.
It basically comes down to if you are willing to try something that has worked for many people, but is not FDA approved for RA and not well studied. I was willing to take that risk because I knew that MTX is bad for the body. It just didn't work for me. Though I also didn't give it enough time. I was experiencing bone damage while on LDN. I had opted to try LDN before MTX. Maybe not the best idea since I did experience damage. Because of that, I would only recommend trying it while getting periodic X-rays.
Some people claim it can be taken safely with MTX and other drugs, but there is no science to back that up as far as I know. I have talked to many people who had miraculous turnarounds in health with LDN. It's a crapshoot really.
I understand you've done a lot of research but perhaps you've missed the fact that MTX and Biologics are often used in combination as studies have shown that they often work better together. Some of them you must take with MTX (Rituximab for example)
That's not to say that monotherapy with a Biologic doesn't work but many patients are started with both.
I started with Humira +MTX and later switched to Orencia +MTX and now after being in remission we have lowered the dose of MTX to 7.5 and lengthening the time btw Orencia infusions.
Here is one research done on the efficacy of embrel alone as monotherapy compared with embrel + MTX
I have not been sick once since being on these combinations (knock on wood) for 2 years and my liver has always been ok with it. (As a side note, infusions work better for me than injections of Biologics but we're all different)
It is great to know you have been in remission and doing very well in the last 2 years. I am also looking into reducing mtx to 7.5 mg a week. I still feel vomiting after I take mtx.
Yes, I did read that rheumy these days go for combine agents instead. Some of them even use triple agents to speed up the recovery process. I am now with mtx and Arava.
Hey Amy_Lee. You mentioned feeling sick after taking MTX. I never felt like vomiting, but I always noticed I felt more pain and more drained the days after taking MTX. I always thought this was quite odd because why should a med that is suppose to be making me feel better, making me feel worse. The same thing occurred with prednisone for me. It made me feel awful (more pain, anxiety, high strung, inability to sleep, frustration, acne, etc). I didn't see the point. They wanted to up my dose. I said no way. Did you experience feeling worse before better with Prednisone when you took it? If so, how long did it take for this to reverse? Thanks.
Amy_Lee - do you take your MTX by mouth as many people who who experience nausea with that route have switched to injectable MTX and the nausea has gone.
I am familiar with the combination therapy, though I had not seen that study and am not very educated on the various combinations and which is best. I just remember reading about the biologics being good for anti-ccp positive RA patients, so I was excited about making the switch.
I just started on Embrell a few weeks ago and haven't had much time to research it yet. I'm just going on the recommendation of my RA doctor. For whatever reason she has me only on Embrell. I suppose the reason we stopped the MTX was because of swelling in the legs and it wasn't working... though the swelling has actually gotten worse on the Embrell. Based on what Amy_Lee was saying, this seems to be quite normal. I guess we were going to give Embrell a few weeks to see if it works on it's own rather than starting on two drugs if not necessary.
Thanks for sharing that article. I'll read it. Good to know you haven't gotten sick or had side effects from the combination of drugs. As for infusions vs injections, we went the route of self injection. I get them delivered to my home. It's pretty easy and painless. Did you find the MTX worked better for you as a pill or injection?
Whatever your doctor advises is best, no question about it. I remember sending you the studies on Biologics and anti CCP. I really hope you find something that works.
A few weeks is way to early, as you know, but darn it's hard to wait. We spend up to 3, 4 sometimes 5 months hoping a drug kicks in without a guarantee. That's tough stuff, and then we start the process all over again if it doesn't work. It's hard to stay positive during that time. Loads of advise on this site to help you get through that time although most who do well on the drugs don't frequent forums as often as they don't need advise as much. Do try and hang in there as more often than not people eventually do find something to help. It took btw 6 and 7 months for me to become symptoms free with no morning stiffness to speak of. I don't know how long it will last but I'm trying to stay positive.
MTX injections were all I ever had so I can't answer if pills would have been worse. I do know that when I went abroad for two months I switched to Orencia injections which didn't seem to work as well for me. Convenience was great but I went back to infusions with good luck and it wasn't much of a hassle. In fact, it was forced relaxation.
I do so hope things start to turn around for you soon.
Lucy11... great memory. I know you offered me helpful info before on this site, but I didn't remember you were the one who mentioned the biologics and anti-ccp. That was some of the most helpful advice I've ever received. It really helped me in feeling confident about the biologics. Thank you thank you thank you!
You make a great point about how most of the folks who find something that works for them are not going to be frequenting these forums as much as the people who haven't found relief. Maybe there should be a "success story" section to this site. Heck, maybe there is and I'm not even aware.
It's also good to know that sometimes just a switch from pills / injections / infusions can make a big difference... rather than changing drugs entirely.
Not sure if infusions/injections can make a 'big' change. Some find both work equally the same. Myself and others found it made a difference. How are body responds to each is unique.
Embrel is only by injection but my understanding is that those who wish to stay with anti Tnf but go on infusions will switch to Remicade. All Tnf's are not the same even though they target the same mechanism so if one doesn't work it doesn't mean another won't. Also with Remicade You can adjust the amount of medication you receive so they can tweak the dosage easier.
I chose to switch mechanisms ( from Tnf to T cell ) which worked for me but you are still far away from that! Let's all send positive vibes that Embrel will kick in for you!
Yeah, the Tnf to T cell stuff is not something I'm familiar with. So you're right... I must be far away from that. Thanks for the positive vibes. Same to you and Amy_Lee
Currently taking both methaltrexate and enbril both by injection once weekly now for the last 2months, prednisone 15mg daily, and a lot of calcium and D3... the biggest improvement has been in walking. It doesn't seem to take as much to get moving or to have movement. Beforehand I was doing a lot of shuffling.. little to no improvement in my hands, wrists,elbows, feet and heels... on top of everything I now have vasculitis in both arms... pain is constant, and most of the time I'm just existing... I've spent a lot of time trying to decide if I'm better or worse on the meds. Still haven't decided for sure. I was diagnosed seropositive Rheumatoid Disease this past May after fighting to have the test done for the past 2-3 years for consistent joint pain and family history of RA
Hey skbladt. I too am seropositive (with a massive 2,600 anti-ccp). I've never seen anyone with a higher value. What is yours? Have you noticed the combination of MTX + Embrell to be more beneficial than Embrell or MTX alone? I've only taken them separately (with no success so far). Have you noticed any relief with the prednisone? I didn't. Reading your message seems like I'm reading my own. We share the same symptoms and ailments it seems. A feeling of just existing... waiting for something to work year after year. Hopefully the answer is just more waiting (as Amy_Lee has recommended). Best of luck.
Long ago at the peak of my RA, I was also just like existing and I could not tolerate the pain hence with the intention to end my life. Therefore, just hang on there and give yourself more time for the medicines to work on you. This is the most difficult period of RA.
My rheumy told me that among all the DMARDs, MTX is the best to slow down joints erosion, therefore it is always the anchor drug to treat RA. Only if you cannot agree with the drug, else this will still be the best so far until now.
I am very sorry for the 2 of you, just hang on a bit please.
Nausea, vomiting, stomach pain, drowsiness, or dizziness, hair loss, mouth sores, diarrhea, signs of anemia and very itchy rashes all over my body.
At the first dose of mtx, I had diarrhea right away the next day. I was ended holding a pot with me while sitting in the toilet. I was not going anywhere for 3 days. It stopped after my GP gave me the medication.
My hair got thinning badly for the 1st 1 year. It slow down after that. Luckily I have very thick hair so I am still okay. I complaint to my rheumy and she said that the benefits that mtx brought to me would be more than the side effects. She would consider to reduce mtx or to change only when my blood work affecting my organs. She did reduce mtx when my liver indicator was very high for few rounds of blood work. Then all went back to normal.
Dang... you had it rough. The thinning hair would bother me. I'm thinking it would be worse for a woman. It seems rheumy's would be more considerate to that.
Needforname , as for LDN, I have put that down as one of questions to ask when I see my rheumy next Tuesday. Seriously, since I am doing well with mtx and Arava, I will not change something happen to me. It is just too painful to be back to the flare situation. But no harm that I ask the rheumy of her opinion.
Yeah... I wouldn't mess with a good thing either. I'm guessing the rheumy will have either not heard of LDN or will advice against it for the reasons I mentioned. The strange thing to me is that my doctors refused to even educate themselves on it.
I just came back from the appointment with my rheumy. She said that LDN is more for other kind of auto-immune problem and the doctors here will not use this for RA patients. I did not continue in further details since she said that.
Hey Amy_Lee. Yeah, it's not well supported by RA doctors because it's not FDA approved. Though if you peruse the "Got Endorphines Low Dose Naltrexone" Facebook group, you'll see hundreds of people who are taking LDN for RA, many which much success and low side effects. There are doctors who prescribe it and have much luck with LDN for RA patients, but most doctors are unfamiliar with it. It's more of an experimental type of thing. The rule of thought is that even though it's not FDA approved and there aren't any wide spread studies to prove it's effectiveness or safety, it can't be much more dangerous than taking an auto-immune suppressing drug like MX or Embrell because those drugs aren't safe either and have many known dangerous side effects. Also, a lot of people who try LDN are those who had no luck with the traditional drugs. A last resort sort of thing. Anyway, I understand why anyone, including your doctor, would be hesitant to prescribe or use it. There are threads on HealthUnlocked dedicated to LDN as well I believe, if you decide to research it further. Anyway... thanks for letting me know what your doctor had to say. Regarding the Embrell I'm on, I actually am starting to feel a bit better today. Maybe it's starting to work I'll take your advice to be more patient... it's reassuring to hear that it took you awhile for your MTX to start working. Hope you have continued improvement with your health.
Thank you for the explanation again. I will KIV that for future use if needed. Yes, do give yourself more time to let the drugs to work on you please. I hope you will be fine soon.
ITYFIALMCTT , I take mtx by mouth. However, when the dosage was reduced, I now only feel vomiting immediately after take it. In fact, the moment I have that in my hand, I already feeling bad of it.
I did complain to my rheumy, she said that as long as I can still handle it, then stay with it because I am in good condition now. She said just do what I do and eat what I eat. I guess for the sake of remission, I have to follow though.
Perhaps you can ask your doctor if it's possible for you to try MTX injections?
Many people on this site have found injections take away some of the side effects. I'm not sure if injections are offered as often where you live but perhaps it's worth asking?
I'm sure you have already tried adjusting your folic acid as tweaking that dose also helps people with side effects too.
Yes, since day one. My rheumy has yet to suggest any injection for me. I did ask about biologics recently, he said I was not qualified for that since my condition is under control.
Sure, I will update. However, I am not sure if our medical system here is the same over there. I am with the government hospital hence I am subject to the regulation of the hospital.
I just came back from the appointment with my rheumy. I told her that I vomited these 2 weeks when I took mtx. I made sure I switch on the light and took mtx in the bathroom with bright light. Then when I vomited, I tried to check if mtx came out. But the food all came out in a mess so I could not determine it.
I was trying to get her to let me have the injection. She told me that mtx is a chemo drug, over here in the hospital, there is no chemo room to administer that, unless I go to the bigger hospital far away every week. That means, over here in our government hospital, there is no injection of mtx on our own like you have over there.
I did know that other RA patients here do their own injection but I am not sure if it is mtx. I will ask them to find out more on that. They are mainly from private hospitals that cost a lot of money which I cannot afford to pay.
At the moment, she reduced the mtx to 7.5 mg for me because this round the liver markers were a bit high. However, she did mention she wanted to reduce it only in 6 months so she said that I have to take note that I might have to take the risk of flare up. Anywhere, she wanted me to split mtx in a day to see if I could take it better.
All is not lost Amy! Someone wrote earlier that they drink ginger tea before and after they take MTX and/or suck on ginger or peppermint candies which helps with their nausea. I wish you the best.
The ginger tea that I have is with honey. There are too many different kinds around, not sure which is good. I bought it from an organic shop, it supposed to be organic and natural.
I will try that. I did drink the ginger tea for a while as I did read that ginger can reduce inflammation too but I did not know that it help to ease the nausea of MTX. Thank you so much.
Lucy11 , I did ask her before but she said since I only left with vomiting, so she suggested I take mtx at night before I go to sleep. Which I did. However, I will ask her again on the injection method coming Tuesday. I have an appointment with my rheumy on Tuesday.
She also said that if my condition continue to be as good, she will reduce the mtx again to 7.5 mg a week 6 months down the road. I am really looking forward to that.
Amy_Lee Rather than tolerate the vomiting for another 6 months or longer, it looks like injections might make a substantial difference to your quality of life. Most people self-inject to it doesn't involve additional clinic visits - and because of the nature of the injection, they typically manage to lower the necessary dose.
I hope that your rheumatologist is receptive to the idea.
My son is a medical student, he always told me to get away with the traditional Chinese Medicine too. I guess doctors are the seem, unless the medicine has been proven good, they would not want to take any risk.
Needforname , my health is more important to myself and my rheumy. I think she saw that I was/am still okay so she suggested to stick to mtx to avoid any complication. I am okay with that.
Beside, it stopped after a year. That included itchy rashes on my body, it stopped also. Nothing could be done, I could only apply lotion on them to avoid the skin getting too dry.
I think Amy that one important thing always to keep in mind that there are so many different forms of inflammatory arthritis with also different factors causing the symptoms that it is almost impossible to know how each individual will react to meds and how efficient they will turn out to be. The fact that your RF and CCP does put you in a special catagory.😊
You are right. There is just too much for us to understand what happens in our system. Seronegative RA is one of the case I like to know more as not much information that I could find so far.
Hi there I am in Australia and read with interest all the comments here.
I started on 10mg MTX per week initially along with 2 x sulfasalazine tablets morning and night plus folic acid for the six days after MTX. After 3 months the MTX was increased to 20mg once a week. Fish oil liquid or tablets were recommended.
It may be 8-9 years ago I was started on Arava (lefluonemide) every day. I stayed on that up to just over two years ago. About 7 years ago my rheumatology dr suggested I start Humira injections which I did. There was only a $6 prescription fee payable as the injection pens were subsidised by the drug company. The only condition was you had to be referred by specialist and be not controlled well and have more than 28 joints affected. Blood tests were sent off to the drug company for their records I guess
I took it for 6 months and felt much better but had two leg ulcers in the past month that were difficult to heal so I stopped Humira.
A few months later I was offered Orencia infusions fortnightly plus the original medications and Arava.
I didn't feel well, in fact I felt really ill and was in bed a lot. I had been considering ceasing it but felt the decision was made for me when I experienced severe angina during infusion and was in hospital for a week.
After that
I didn't try anything else until a year ago I started on Xeljanz which I take one tablet morning and night. My Rheumatoid is still not controlled and I have chronic fatigue, underactive thyroid, adrenal exhaustion, high cholesterol and angina
I have tried lots of things too and feel lots are not worth it. I take many vitamins including Mega B magnesium, ginseng, calcium etc
Heat packs help as does keeping warm and I sleep on a medical lambswool. I neither drink or smoke as that makes things worse. Stress makes it worse as does not getting enough sleep and over doing it.
Lesley_1 , I am very sorry to know your situation. That is why when DMARDs work for me, I would not want to mess around with them really.
On another note, my rheumy always reminded me not to go for any supplement or herds unless I got her or his approval to do so. Therefore, I only take what they want me to take.
At the early stage, when I was down to 38 kgs, I felt extremely cold inside. I am from Malaysia, tropical country, hot weather all year round, but I had to sleep on electrical blanket. I am glad those days are over by now. I hope you find something that work for you. My advice will be to check with your rheumy to decide. Australia has a very good medical system. My eldest son was born there and I was there about 4 years.
If your joints are still in good shape but in pain, you can still work on them to get back to normal. Once I thought I could not do any more court games. I went back for badminton few months ago, I was okay though I could not finish my game. That was because I did not want to overwork my hands. I believe given sometimes to myself, my hands will get stronger and I will be able to finish the game.
Last week, I joined the bowling game. That was the first bowling I joined after I was sick. I was hesitated if I could hold the weight of the ball with the swing and momentum. I did it again. My colleagues were having muscle pain after the game but I was not at all. I believe this was because most of them do not exercise daily like I do.
Look into your own condition, if your joints are not being damaged yet, you can work on them but you need to give yourself sometimes to see result.
I hear what you're saying and would agree with you that before damage is done, there is hope. Unfortunately , as I've said previously, the damage done to my hands/ fingers is irreversible. My fingers (8) resemble a roller coaster, I cannot close my hands/ make a fist and I drop things constantly. Writing too, is an issue as is using cutlery. Although I've been in physio for years, without surgery, they will never change.
When I was first diagnosed, the physio worked on my fingers extensively but the disease was so aggressive and uncontrolled that the impact was quickly visible.
I've come to accept this now.
However, it is good to hear of your progress and your sharing of this will inspire and encourage others to continue pushing for positive change.
I am really sorry of your condition. Yes, once the joints are damaged, nothing can be done. I would say that rheumy should explain the progress of recovery clearly to patients to avoid all these unwanted damaged. On the other hand, patients must also trust the rheumy of his or her capability to help them.
Hahaha... Marie, thank you so much for the Peter Pan.
Yes, since we know so much now, we shall do what the best is for ourselves. I may be very luck to say that my rheumy here listen to what I had to say and answered all my questions posted. They do not rush me out because of time constraint.
Every time before I visit my rheumy, I will do write down my questions and print them out for my rheumy to answer. Now that my condition is good, I have less to answer because I have yet to find more questions to answer beside a few where remission is concern.
Hi Amy. I was interested in your post because, although my diagnosis had changed from seronegative RA to primary Sjögren's - I too had a lot of success with the methods you employed to prevent damage occurring to your hands. For about 9 months my hands were excruciating and presented with classic RA, leading to my diagnosis and treatment in 2011. I am an artist and my hands are crucial to me so I sought the help of a physio and an occupational therapist. I researched exercises, had magnetic short wave therapy in my local hospital for my wrists, took Methotrexate for two years - eventually by injection - and had Hydroxichloraquine added in because I couldn't tolerate MTX at the higher dose. After a while my bloods looked better, my hands came back to near normal with only one small deviation to my little finger and I eased up on sitting on my hands and using the squeeze ball my physio gave me. I still walk my fingers to avoid drift most days.
My thinking is that seronegative autoimmunity is a very different beast and many of the conventional drugs don't work for us. This galvanises us to look hard at alternative approaches. My Sjögren's is also classed as seronegative although I have a high ANA and high inflammation, immunoglobulins etc and my lip biopsy was 100% positive.
Those with seronegative primary Sjögren's don't have the same risks for Lymphoma as those with Ro & La antibodies - but have a higher risk of neurological involvement. This is what I have and it appears to have progressed from affecting the small nerve fibres in my feet in 2011 to affecting my entire body in the form of small fibre neuropathy (now just tingle and numbness, tendinitis and autonomic dysfunction and mild secondary Raynauds). I am hypothyroid and struggle constantly with low body temperature and metabolic issues so losing weight is very hard for me even though I can presently eat very little.
I'm on my fifth DMARD, Mycophenolate Mofetil (MMF) at the highest dose and am told that, if this fails, there is nothing more that they can offer me. The daily fatigue is horrendous and my breathing and swallowing are now being affected and I have no temperature regulation. I'm thinking very hard about all this and am minded to explain to my connective tissue disease team that I wish to stop taking Mycophenolate and try LDN instead. The MMF doesn't seem to reduce my high inflammation levels and I'm told this is because Sjögren's uniquely doesn't show disease activity through these - they are always high and this is my normal because of severe concentration of my blood due to high amounts of IgG. But Methotrexate and the others reduced my inflammation levels significantly so this seems odd to me. My neurologist and rheumatolgist both agree that my neurological symptoms have caused some irreversible damage now and this is born out by me. But how to prevent more occurring doesn't seem to be a well understood or researched area at all because it's very rare. Again, I feel that seronegativity is at the heart of this.
I struggle to understand the science but I have learned the hard way that seronegative autoimmunity can often step sideways rather than disappear into the ether as we would like it to. I did all I could to prevent RA damage occurring but I'm now stuck with permanent damage to my tiny nerve fibres - meaning typing is hard, proprioception is a problem and pain is mostly now in parts of my face, throat and oesophogus, fingertips and my guts.
So I think, if you can tolerate these meds, it's very wise of you to only reduce them very slowly and keep researching alternatives as you are doing. I'm very grateful to learn more about all this through your post and would be interested to learn more on what your research on LDN reveals.
First of all, I am very very sorry for your condition. I believe you have checked with your doctor on how to deal with the nerve fires damaged issue, can they not able to provide a solution to you? I am also seronegative RA as both my RF and CCP are negative. May I know why and how your diagnosis change from seronegative RA to primary Sjögren please?
When my blood work showed that my liver indicator was 3 times higher than normal, my rheumy reduced mtx dosage for me and it worked, my liver indicator came down to normal again. Did your rheumy recommend any reduction in the mtx dosage for you before she or he decided to change the DMARDs? Though you could not tolerate mtx, after 2 years, was your hands back to normal before?
I am not very sure if it is a good idea to stop mycophenolate and go for LDN. I suggest you check with your doctor before you do so. All drugs take a long time to kick in hence maybe you need to give yourself sometimes?
As for myself, after 6 months of mtx and prednisolone, I was still in great pain. The pain was reducing very slowly and my body was swallon and slowly my body weight dropped to 38 kg and I left with only skin and bone. Then slowly, my body weight got back to normal few months down the road. That was from being a balloon to a skeleton then back to normal, it took me about a year. Then the pain was reduced from 10 to about 4. That was the time my rheumy wanted me to slowly stop prednisolone.
Since I do not understand primary Sjögren's, so no way I can offer any advice. You were saying seronegative autoimmunity can often step sideway? This makes me worry too. I will check with my rheumy to see what they have to say.
I didn't intend to worry you Amy-Lee. However I think the idea that seronegative is often more sneaky is a well excepted fact by most rheumatologists.
But I have been coming here and Lupus UK since 2011 and have seen many people come and go who have seen their seropositive RA relatively well controlled by MTX and Biologics. Of course there are also some seropositive people who cannot get their erosive disease under control or can't tolerate the drugs.
Whereas these forums are often full of people with seronegative autoimmunity still thrashing about trying to find a cocktail that works well for them.
My rediagnosis was made because primary Sjögren's (pSS) can imitate RA extremely well, and MS too. Mine imitated RA for two years and then started to mimic MS instead. So, last year I had relocated and was in a bigger teaching hospital and off all meds after allergic reactions had hospitalised me. A very senior rheumatolgist looked at my bloods, paperwork history and advised his young registrar that this wasn't RA because seronegative wouldn't cause neurological symptoms like mine. So a lip biopsy was ordered, despite my mouth not being particularly dry or my eyes exceptionally dry (but dry enough to previously diagnose Sicca Sjögren's secondary to RA). It came back 100% positive for Sjögren's - he couldn't recall the last time he had seen s result like mine! So my burning mouth and peripheries were at last explained, and the tremendous fatigue too.
My ANA bloodwork actually points more to rare diseases Scleroderma or Myositis - but so far I don't have these - and the RA symptoms have mostly left my hands and feet after Methotrexate. But the neuropathy continues to plague me and has eroded some of my nerves so I lack sensation in parts now. And I have a terrible taste all the time and other gastric symptoms. However the connective tissue clinic doctors I see are extremely good and see me and their connective tissue patients 4 monthly (very unusual an NHS hospital) and advise me that I should keep taking the Mycophenolate for now. I feel that it would be disrespectful to them for me to stop without proper discussion. So I will carry on taking it (like MTX it is well monitored) but, if they agree when I next see them, I would like to stop (by then I'll have been on it for a year) and see if my symptoms get worse or not.
I chart my bloods as you do but my rheumatolgist says this makes no difference with Sjögren's because my PV/ESR and creatinine will always be high because Sjögren's makes the blood so concentrated. My liver ALT, AST and GGT all soar if I drink any alcohol at all or take paracetamol. Liver involvement is quite common with Sjögren's and so is lung and kidney involvement sometimes seen. I appear to have very early stages of all three which is another reason I agreed to take Mycophenolate.
Because it is seronegative I wouldn't be offered Rituximab (it wouldn't work) and they say the RA could come back or Lupus or Scleroderma could still show but treatment would be the same. But in the absence of others it's primary for now at least. Primary and secondary have different processes underlying. I think I've had Sjögren's since I was young and I'm also hypothyroid.
Last year when off all drugs including steroids - my ANA at last showed very positive and my knuckles and finger joints started to hurt and swell again but this has gone away with Mycophenolate.
Hi Amy, my husbands hands have severe ulnar drift with bent thumbs and numerous nodules. He is 69. There is surgery available and I would think about it for me if that happened but he has heart failure so it's not possible and he couldn't cope with having it done under local anaesthetic
Oh, dear! It is so hard for 1 in a family to have such chronic sickness and you both have different terrible problems to deal with. I am very sorry to know that, dear. Sending you a big hug!
Agree. Only those who have been through will know what we have gone through. I remember while I was only after a few months treatment, my colleague touched me accidentally while she walked pass, I was in tear in pain and I leaned against the wall next to me and waited for the pain to get over it. Oh!! She could only say sorry in surprised as to her, it was just a light touched on my shoulder. She had no way to know how painful my shoulders were.
You have to take good care and be positive already.
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