Advice

[artritereumatoide]

Hi everybody, I'n new and write from Italy so forgive My English.

I've been suffering from rhematoide artritis since 2013. I've been on different medications: methotrexate (no effective at all); steroids (make me crazy, I kept screaming at my children and students), therapeutic cannabis (worked wonders on pain but I was always dizzy and whenever I took my car was scared of causing accidents or being stopped by police). The last two medications I tried were tofacitinib( xeljanz) and baricitinib (olumiant). The first made me completely sleepless, always restless, with the constant sensation of having pins in my blood and couldn't even talk because of anxiety and fast heartbeating, so I interrupted it even if my rheumy didn't agree because I had a good control of the pain, then I tried olumiant and I had opposite reaction depression, extreme fatigue, I could only sleep. So when i last saw my rheumy she was quite annoyed because in her opinion I exaggerate symptons maybe because I haven't accepted the disease ( who would? Would she?) . My feeling is that she doesn't believe me or underestimate these side effects which maybe are seen as minor ones compared to more dangerous ones. What do you think? Would you suspend the treatment with my side effects or would you stick to it?

At the moment I have no cure....She thought I needed detox...

[sylvi]

You need to work with your rheumy darling.Sit down with her/him after writing down all the problems you have had with each drug and also write a diary of symptoms you have and the side affects so you can show them when you see them next. Hugs darling.xxxx

[Shalf]

Hi there,

I'm on Baracitinib 4mg and have experienced greater fatigue. It does however do it's job in controlling inflammation. I think you have to weigh up the pros and cons. I don't think many people are completely satisfied with their treatment as there are side effects with many of the meds. People's expectations are different therefore very difficult to know if your concerns are minor or not.

This forum provides experiences from others. It's worth browsing in the search box. This will give you insight as to how others cope, manage and tolerate their meds. You are unique though so read with an open mind.

Stay in touch and all the best.

Xx

[Jules13]

I would advise changing your doctor. You have to trust them and if the relationship isn’t there and you think she’s wrong then it’s not a good way to keep going forward. Maybe ask to see another in the practice and go from there. But don’t just stop your medication. It should be supervised. X

[medway-lady]

I think it sounds like a lot of medications in a relativly short period as some take 3/4 months to work I'm puzzled as how you got you dr to keep on changing them. Not only that but steriods are not the same as DMARDS. Some side effects are short lived and to go from MTX to biologics is very unusual here too. So perhaps the dr is saying that you need to give the meds more time to actually work, and there is no cure its about controlling the condition. Maybe you need to talk to someone as anxiety alone can do all these side effects and in reality the meds might be working fine. I don't know but it does seem like you've had a load of meds and a lot of help so might be worth asking for some advice from the NRAS who do publish leaflets and have a help line. I would say you need to give all medications a chance to work and it may take months, and no I would not just have stopped as some of this stuff is very expensive and should be given a chance.

[artritereumatoide in reply to medway-lady]

Actually I took metho in 2015 for one year but it didn't work and together with it steroids which worked but can't stand them. For more than 1 year I took cannabis but too scared of possible consequences. From june to october 2018 xelhanz which worked extremely well on pain but no sleep possible...then started olumiant effective but depression unbearable. I have mood issues normally but can handle them with medications I felt I couldn't...

[medway-lady in reply to artritereumatoide]

Its really hard and only your health professional can really help but sometimes it is just trial and error. I wish it was different so think you need to really talk to a professional. I do sympathise its very hard especially with a family but perhaps another visit to the GP with a list of the issues as it may not be the RA medications but something else. Try keeping a diary for a couple of months too to see if a pattern arises.

[Mall in reply to artritereumatoide]

You mention here that you have mood issues which you can handle with medication. Quite a few of the drugs used for treatment of RA can affect mood, I was on one that made me depressed and I have stopped taking that. Certainly steroids commonly cause the symptoms you describe.

Please make sure that you rheumatologist is aware of your mood issues and the drugs you take for this. Maybe there needs to a discussion between your rheumatologist and the Dr prescribing drugs for your mood difficulties. Self medicating for either problem isn't wise. Whilst cannabis can help with pain and some RA symptoms it can also be very detrimental to some people with mental health difficulties.

We are not Drs on here but fellow suffers and the best advice we can give is to try to build a good working relationship with your rheumatologist. If you can't with the one you have then ask to see some else. Give them as much information as you can about your side effects and what you have tried. It does take a while for the best drug or combination of drugs for you is found, we are all very different.

Best wishes

Mall.

[helixhelix]

It's dreadful when you get your hopes up about a drug and it doesn't work for you. And it's a fine line between keeping on trying something because it works a bit even with side effects, and deciding enough is enough. Only you can make that decision - not your doctor.

What I can't quite understand is why your doctor started you on tofactinib, which is a JAK inhibitor, and when that didn't work for you started you on another JAK inhibitor (baractinib). Why not change to a different type of drug? In the UK you would start with an anti-TNF drug then move on to other types and only try JAK inhibitors if nothing else has worked. The UK approach isn't perfect of course, but it does raise questions about the choices made for you.

Anyway, I suggest you calmly write down the side effects you've had and how that has affected your life, your work, your children. Then go see your rheumy and calmy explain that you need something different. Doctors don't like being told what to do, but you could say that you have read that there are many different types of biologic therapy so why can't you try one of those?

If you don't get a good response then change your doctor!

[Yogi-bear123]

I also have had side effects that I couldn’t handle. Last drug was cosentyx, think it was actually working but was SO scared with the side effects that affected my nervous system that I said no more. Next drug if it goes through is a Jak inhibitor... i don’t think u are wrong to give up a drug because of side effects.. these are heavy duty drugs we are dealing with and only u know what u feel and what u can handle...If your rheumatologist thinks u are exaggerating change if u can! Good luck.

[Kalimera57]

Your English is great! I wish I could speak Italian as well as you do English ! I haven’t been on any of the meds you’ve been on so all I can say is if you’re worried about your side effects tell your rheumy.

[dbestdeb]

You have to stay on one drug long enough for it to work and some of the symptoms to subside. It’s important that you trust and work with your doctor. She isn’t the enemy but your advocate. Describe your symptoms but if she says give it more time, then try to do that. If you don’t feel you can trust her, then find a new doctor. My rheumatologist and I make decisions together about my treatment options. You should work as a team for you good. Good luck in your journey!

[MissMinto]

Hi artritereumatoide,

I cannot take steroid tablets because they turn me into a complete psycho. BUT I can tolerate steroid injections in my bum with no side effect other than feeling fantastic, and it lasts about 3-4 months.

Another medication worth considering is Amitriptyline - I take a low dose at night, it helps me to sleep, is good for pain and is mildly anti-depressant. It's taken in much larger doses for full blown depression.

It's unusual to take methotrexate on its own, it has a greater chance of working if taken with something else, as a combination therapy. Again, injections can be more effective than the tablets.

So, there are some things to discuss with your doctor. If he/she is is not very helpful, maybe it's time to find another one who is more simpatico.

[artritereumatoide in reply to MissMinto]

You made me laugh... Yes, you're right it's time to look for a more "simpatico" rheumatologist. Thanks