what would you do?

[Littleam]

Hello on this lovely sunny day!

Please can I ask for some advice?

I’m 5 years on after being diagnosed with sero positive RA. I am meant to start medication number 7, nowish. I’m reluctant.

Most medications make me feel very poorly 🤒 I started out with all this, I believe due to a contraceptive device which has world wide caused thousands of women severe immune responses & premature menopause. The law suits are ongoing. I had to have a full hysterectomy in 2019.

I feel post menopausal now and different.

I’m now medication free as I have been waiting many weeks for the next treatment to arrive, now it has (olumiant).

I feel pretty well and not like I have been for many years, I don’t feel drained due to any medication and very confused 🫤

I guess my question is, should I hang on to see?

Any thoughts are welcome, TIA xx

[Madmusiclover]

Ultimately it’s your decision. 5 drugs made me poorly then bang the one you are being offered worked. It has a short half life so you can come off it quickly,

[Littleam in reply to Madmusiclover]

thank you for your thoughts.

I just don’t know what to do…

[Madmusiclover in reply to Littleam]

Personally I’d try it. No side effects for me.

[Amnesiac3637]

Difficult. On one hand you’re not hurting, not messed up by some drug which doesn’t help (and gives side effects and no real benefits) and on the other hand, as you’ve got seropositive RA it’s unlikely to get better by itself so at some point you're going to need to address how you deal with it.

Of all the drugs I’ve had over thirty plus years (and there’s not many I haven’t sampled) Olumiant worked best, is in tablet form so out of your system in a day or two, gave me no side effects at all and was probably the ‘kindest’ drug I’ve ever had. It unfortunately switched off when I had Covid last year and I’ve mourned it. Am on another JAK, Filgotinib, which is working but has some head-related side effects for me.

You could try Olumiant - if you can’t tolerate it you can be off it in very short order but if it works it’s worth it. There’s quite a few others on here on it and I think the verdict is pretty positive - I’m sure you’ll be advised. All very best of luck!

[Littleam in reply to Amnesiac3637]

thank you, you offer some very valid points!

[Bagpuss2021]

Hi, omg you have been through the ringer. I myself find most medication side effects are the worst, and find it difficult to understand why we all take meds to help the conditions we have when the side effects are so horrendous, then more meds to help the side effects. the only thing that keeps me taking RA meds is eventually all this pain and days feeling crappy will stop. You need to do what's best for you. hope everything goes well. Good luck.

[Littleam in reply to Bagpuss2021]

thank you. I agree, so far the meds seem to make me feel poorly and that’s becoming difficult.

[wilbertjellyfish]

If your pain and symptom free then I'd hold off taking anything.These things are always a balance between benefit and side effects, in the past I've stopped meds because the side effects weren't worth the reward but if you can manage on nothing enjoy it while it last.

[Littleam in reply to wilbertjellyfish]

thank you! I agree all of them have made me feel so poorly at times. I’m going to hold off & see!

[AgedCrone]

You won’t know until you try it…& as you have had such a chequered journey so far, & you know you definitely have Sero+ RA I would try it…unless you are extremely fortunate you will need to take some type of medication…so the sooner you find the one that really cotrols the disease,& that you can tolerate….the better.

Hope the olumiant is the right drug for you.

[Littleam in reply to AgedCrone]

thank you, I understand what you are saying. It seems most of the meds make most of us end up with the general rubbish feeling. Most have drained my soul!

I’m going to sit tight for a bit longer, just to see 😊

[medway-lady in reply to Littleam]

Please remember RA can affect your lungs, blood it’s not just about pain and swelling. It can have hidden risks not to take medication so whatever you decide I wish you the best of luck. X

[lilyak]

If you are symptom free, and feeling better, feeling good, its hard to recommend trying another medication. To really know, can you tell me more about you?

How were you diagnosed? Did you have blood tests, scans, what did they show? Do you have erosions, joint damage? Have any other treatments made you feel better? Are you on steroids or have you been in the past? Sometimes RA is diagnosed, but its not severe, or its not even RA, and sometimes it IS RA but it doesn't require treatment. 'Watch and wait' is an appropriate treatment course for some people.

But given your diagnosis was 5 years ago, if you didn't response to treatment, you should have some pretty obvious markers and damage. If you don't, then I can't see why you shouldn't take this time, as you're off medication anyway, to just see how you go. Olumiant works quickly, you can start it at any time.

wish you the best, its a hard decision, but I would wait and see.

[Angels54]

yes if you feel good enjoy it 👍

[Littleam in reply to Angels54]

I think I should but it’s scary as you’re told to take this that & the rest so that this that & the other doesn’t happen!

It may well be a damned if you do & damned if you don’t!

[Littleam]

thank you, really good points!

Diagnosis was from blood test but wasn’t a high marker and other inflammatory markers have been normal since initial diagnosis. No damage or erosion.

I was diagnosed with hyperthyroidism a few years before this but it somehow went away.

I’ve only had steroid injections which settle any fatigue I’ve had but I wonder now if the medications I’ve tried caused the fatigue and general malaise.

It’s all a bit confusing as I feel quite different now being post menopause.

I also wonder if the menopause caused the stiffness I suffered only because I haven’t had any since that happened.

Maybe I am just hoping but something doesn’t add up so I think I will hold off starting my new medication- just to see!

[Blackberrywine]

Not much use, but it's up to you. I'm in a similar boat in that everything I tried made me worse. Other than the odd intramuscular steroid, and shots into joints I no longer take drugs. Things aren't perfect but I think this may be a weight issue. I really need to lose weight! That said, I no longer catch infection after infection.