I joined the local RA support group physically and in FB few months ago. I hope I could share my experience and inspire RA patients to look forward to fight the disease positively.
I always like to read and know more of the disease and the drugs available so that I can be in better control of my own conditions. Recently I shared some of the side effects of methotrexate because I found the articles were very simple and straight forward to read. Finally, I was being told not to share anything bad in the group because the patients there are looking for comfort not further stress to scare them away.
I told the administrator of the group that knowledge is the key for us to control our illness, so I am not scared to know more about the side effects and so on. But, I deleted the posts finally with a very heavy heart.
I can see the real difference between the two groups now. Here we share just anything, bad and good, mainly bad things and we get support and advice. Over there, we can only share good things. I would say that is really not the right approach.
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Amy_Lee
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I agree knowledge is power! While these potent drugs can be immensely helpful, we also need to be aware of the side effects. Sadly, doctors gloss over these & the pharmacy pamphlet provided is limited. Information from others with RA can help us ask the right questions & pay attention to critical symptoms that we may otherwise not address, such as those mild symptoms someone without RA can ignore. Thank you for sharing & helping & do not be dissuaded!
I always believe we need to know more then we are in control. If we do not even know the side effects that may coming along, then we may just take it too easy. On the other hand, if we know what may come along, we will do whatever we can to prevent that and we will be more careful with the drugs and things that we eat.
I am not worried about the side effects, I know my rheumy will look after me well for that and I track the blood works in excel and I will raise just any question if I see anything not right in my blood works.
Say if I did not know that there might be so many side effects, I might not bother to track my blood works really.
The patients of any group are looking for support and knowledge. It is a wonderful thing to give hope to people from people who have reached remission.
Sugar coating the side effects of medication is just ignorant and mean. It is ludicrous to believe patients haven't already looked up the side effects themselves and are in fear. It is comforting to know someone has experienced these side effects and they are now OK and in remission. To talk to someone that knows the suffering of RA symptoms has a calming effect on someone still suffering. Knowledge is power.
You and I will think so. Unfortunately, it may not be the case always. Recently I just has another RA friend who I just got to know her a few months ago after I joined the local RA support group. I took her to the hospital for a day tour and to seek medication. She suffer in pain for about 8 years. She was lucky that her RA is not as aggressive as mine, hence beside the swell on her limbs, her joints still look fine to me.
After the one day tour in the hospital, she started her treatment. She started to felts much better and she told me that she would go back to her job again few more months later. Before that she was treated in a private hospital that costed her a lot of money hence she stopped going. I am treated in the local government hospital which save me a lot of worry about the money. I recover very well and I am in remission. She talked to me and decided to go for the tour with me.
Recently, she said that her friend is working in a physiotherapy center nearby, her friend has frozen shoulders and recover just with doing the exercise without any drugs. She stops her medication for a few weeks now and she claims that she is in great pain. I try to explain to her that she should not worry about the side effects and trust the rheumy who can do the best for her. She refuses to listen to me anymore. She decided to go all out to do the exercises without the medication.
I told her that frozen shoulders do not have the immune system to attack the joints but RA does, hence she will be risking her own joints. She said to take the medication, she will be risking her other organs including the kidney and so on. I told her that not all will get the side effects and she should listen to her rheumy but she refuses to listen.
She still goes to the appointment but not taking the drugs. I see no point doing that really. She will confuse the rheumy that the drugs are not functioning at all. I give up really and I find helpless not able to convince her to change her mind.
I can only tell her to be responsible with the result that comes along.
While reading about your friend, my mind kept saying'
"You can take a horse to water, but you can't make them drink."
I too know of a lady with RA. She is treating her disease by talking to a counselor about her abusive childhood. She is convinced that emotional pain is causing her hands to deform and she doesn't understand why. this counseling isn't working...so sad some people believe that they caused their own disease. They bought into the story of self blame... so sad. I don't waste my time or energy trying to "convince" people to seek a rheumatologist. In the end we all have to make our own choice.
You are right but I feel very sorry for her decision and I feel very bad when hearing her decision. However, I did decide to leave her alone until she comes back to me. I will on and off call her to check her out but I will not convince her anymore, it is her decision.
On hearing that, I had a very heavy heart, my daughter was with me hence I released all to her on my feeling. I put in so much effort to connect her but now in vain and she still goes for her RA appointment, it is real wasting time.
Hi Amy_Lee - That IS the big difference. People may not like or understand everything you say or even believe, but at least here most people allow you to say it without prejudice. Although I do understand. I have not really told people what the MTX felt like to me, because for the most part it was my experience, and others have had such a positive experience, I don't want to deny them that...
I left a local group for a similar reason. They got upset because I told them the positive experience I have had with Minocycline. *sigh*
To help them, I will continue to share the good only from now on, I will not leave the group because if I find any good information around, it is my duty to share with people of the same kind.
MTX responded differently with different people, I am sorry that you could not get along with it. However, I think it is okay for you to share your experience here too because we are matured enough to know the difference though many of us do get better with mtx and go into remission.
To me we should know the good and bad of each medicine that we take so that we can minimize the adverse impact. Each time when my rheumy gwve me something new, I would go online to check the good and bad of such a medicine. I would not just take it and know nothing about it. When I read the side effects of mtx, I questioned by rheumy and she told me that the benefits that it would give me would be far more than the side effects that I should worry about and I trust her hence I submitted myself to her.
When I continue to read on the side effects online, it builds my confident each day because I do know that the dosage RA patients take will be very much less than the cancer patients hence the side effects may not happen at all to us.
Limited knowledge cause fear, that is what I can see. Very sad that they only want to know the good information not the bad that may come along.
• in reply to
Minocycline would of been offered to me if I was diagnosed during the first few months of my RA onset. My rheumy informed me that since I was 1&1/2 years into the disease (with deformed feet) when I did get diagnosed minocycline was too gentle of a drug....as it turned out, so was hydroxy & sulfa...grrr
You see, we need the experience people to tell us the result. Not those who have no such sickness to tell us what to do. At least if my rheumy gives me this drug, I will ask him or her of the problems that you guys had come across. So why worry about the bad effect to be known? I am not worried about it but I want to be in the know to be ready with it.
What I find so strange about the Minocyclone is that people think it has no side effects. Of corse it does. It is an antibiotic, just like sulfasalazine. All antibiotics carry side effects. Maybe it isn't commonly offered on a regular basis outside of North America because it isn't as strong of a drug to control RA. I was informed it wouldn't control RA if taken when your RA has been around for awhile. But it does have side effects too.
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Oh sure - it does have side effects, but it is also one of the only antibiotics that reduces inflammation. I am doing the best I can to handle the micro biome issue through a process known as GCMaF, an enzyme that every body makes in greater or smaller amounts, but that everyone needs.
I think everything comes down to what you are comfortable with. I read the short and long term effects of both, and determined that for me at least it is the right path. If it doesn't work, I'll have to look another direction - maybe LDN (low dose naltrexone). And again, for me, MTX and the biologics are just a last resort. That is not to dismiss anyone that is or will use those. Hope that makes sense...
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Actually I didn't ask my rheumy about it. I talked my GP into treating me with it, under a set of rules that she and I agreed to.
I was actually 5 years in and my toe on one foot had turned and the other foot was starting. Overall it could not have been more positive of an experience so far..
• in reply to
That's good news. Are you still on minocyclone?
I did ask my rheumy about it during my 1st visit to hm. A co worker mentioned to me that her son was cured by it.
When I saw my rheumy for the 1st time, both my feet were deformed. According to him my RA attacked me aggessively in the begining. He informed me that minocyclone is used for up to 2 years before some people hit remission...but I was to late to try it.
• in reply to
Yes - I've been on it a for a year now. Nothing will make either toes or fingers straighten back out, but everything stopped turning, so I am happy with that. Much less pain, very little redness or inflammation, still tired, but the fatigue and the pain come last for remission. Overall I have pretty good days if I take a couple of tramadol in the morning, which will get me through the entire day. Recently it was my ribs in the back (latissimus dorsi) that were the main problem.
My understanding is that it can take three years or so to get to remission and I am only one year in. Given the physical results, and my last lab work, I think I am doing "mahvelous, dahling!" ha ha.
I'm sorry they wouldn't consider it for you, but if what you are taking is working, then all is well... Happy New Year!
• in reply to
That's great news that it is working for you. I finally am reaching remission after 3 years of struggling.
It doesn't matter our path to remission, as long as we get there.
How much all of us struggle along the way only we will know. You 2 are right to say that as long as we get to remission, regardless of our path, it is still good and okay for us. Before that, the pain was so terrible and in remission, we are just like our normal self. Therefore it is good always to see what other option we have in hand from the same group of patients then we can discuss with our rheumy the option we have in mind for ourselves after knowing the good and bad.
I am glad that Suzannedale is in remission and I hope Caeryl will be there soon.
Caeryl, I believe you must have very good information in hand before your GP agreed with you on that. However, no harm to get the opinion of your rheumy to be safe. I still believe rheumy is the professional person that we can depend on for our disease. Too risky to just do it with GP under a set of agreed rules. This is just my own opinion.
Whatever that I do, I will certainly ask my rheumy first because I trust him or her. Yesterday I met up with a nutritionist and he tried to persuade me that I should replace my folic acid, calcium and vitamin D by his so call natural products of the same kind. In addition, he said that his products are 100% pure and are all extracted from fruits and vegetables but the same products that I have got from the hospital are all synthetic hence they will do no good to me. I told him that I trusted my rheumy who knew the best for me and he or she would ensure that the same products will not interact with methotrexate that I take.
He again said that his products will finally cure RA but if I continue the hospital products, I can only control the RA but will not cure the root cause. He is selling Amway products. How can I trust him when he said his products can cure RA where I know RA cannot be cured but control.
Sounds like you need to find a new nutritionist.what are his credentials?..... Anyways, how can his products be natural if they come in a pill or powder? Natural products come from the earth.....the less processing the better.....
That is exactly what I told him. I have no nutritionist actually because I do believe I eat healthy.
Few weeks ago when I went to the park nearby for my exercise, they setup a counter to provide free health test. I just wanted to see how good they were hence I joined in. The test showed that I was very healthy and I told them of my disease. Then they wanted their nutritionist to see me to advise me of how to get out of that disease. That is how it started. Apparent the nutritionist did provide services internationally. But after talking to him, I do not think he is up to the level that I expect.
So I still do not believe in any diet plan that will cure RA but I do believe it will health us to stay in remission. Whether we are sick or not, healthy food will certainly help us to maintain our good health.
Suzannedale, thank you for the link. It is really interesting how they can recruit so many innocent people. However, I do have many friends here who make good money after joining them.
Just gone through it and copied to my kids to get to know. Many of their classmates go in full time to do that and they seem to make good money though. However, I would rather my kids not to get involve and not to buy anything from them to avoid being stuck there eventually. It is better for them to go for their profession than to join this kind of company for quick money if they do make it.
This kind of marketing plan is certainly not for me. So much commission or profit for the agents then the quality of the products will be in questioned then.
Agree with you on this. It is just nothing more than a pyramid company. Some of the down liners do make small money to live a good living though not as good like those at the top.
I think you were wise not to take the advice of a self-proclaimed nutritionist who claims to know how to cure RA. I bet if you told him you had cancer, he would know what to sell you to cure that too.... I wonder how many people threw away their life saving medicines to buy his "special" products.
It is certainly very bad of them doing that because sick people will do anything to look for something that can cure them naturally if possible.
I believe my the other RA friend is now trusting someone else and leaves her medicines and goes for the natural way to cure herself. Seriously I am very worried for her. But nothing I can do really, it is her own decision.
Yeah - No trust for those who claim they can cure RA.. Cure would mean not just to stop the progression of the disease, but to allow you to thrive. Also, I think I would expect it would reverse at least some of the damage...
May be time for a new nutritionist... Although, he or she might have a good point about the purity or "naturalness" of the hospital products...
The problem is that my rheumatologist would not discuss it. So, I can go the way of the MTX and biologics, OR I can find something else that might work for me. And the rules were pretty stringent, monitored by lab work and radiology tests as needed. I'm really comfortable that I am in good hands - Thanks so much for your concern Amy_Lee, but I think we each must follow our hearts (and I did a HUGE amount of research on a wide variety of sites before I went that way.) Hope you are having a great day..
Most of the people here like to find a lot of information for good or bad to be in control, this should be the way to go. I am glad that I am here to read what you guys have experienced and shared.
My doctor advised me of the side effects. I had the sick stomach feeling and the fatigue big time. I started out feeling sick for a day and sleeping another 2 days with pain throughout the night and limited activity 7 days a week. As I understand Methotrexate is the lower rung first treatment, I hung in there thankful that I didn't have other bad symptoms. I wanted to try and not change to another harsher on my organs drug.
It is now 20 months since dx and the sick feeling is very very minimal (chewing cinnamon gum even helps) and I have no bad days like I used to. I am fully functional 7. Days a week now and it's amazing. I can now rock 4" ankle boots at 64.
I know the chances of this lasting for much longer probably are not too good, but I am thrilled right now. I know that it has taken what I consider to be a long time, but my gut hunch was right and I am glad I didn't jump to another treatment and tuffed it out.
I guess this is in support of knowing the bad parts but hoping for the good and trying to be patient and hopeful- it gets MIGHTY hard, sometimes, to do that though.
I am glad you hang on there and to enjoy the improvement today. I have other RA friends who have similar stomach pain after taking mtx. It should be taken with food. You cannot take it with empty stomach. I believe you know about that since you know the good and bad of mtx.
I have taken mtx since my first treatment in Jul 2014. Now I still have the uneasy feeling after mtx. I feel vomiting and not comfortable. My rheumy told me to take it at night and sleep over it, which I did. Just like you, I enjoy my recovery right now instead of worrying about the side effects that may or may not come along. I will leave that part to the blood works and I trust my rheumy will monitor it well to advise me what next to do.
I believe a lot of time the wrong decision is due to lack of knowledge of the disease and drugs used.
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