In a state of sheer panic

Starburst

After 3 years of this, you would have thought I'd be settling in to a routine with arthur but I'm afraid, I still have moments of running around like a headless chicken.

The bottom line is that I need to add another medication to the mix - I'm on 20mg injected MTX and 400mg celebrex. Choosing the right one is not easy. They all have horrible side effects and I am scared. I am scared of the long term (unknown) side effects and I am beyond terrified that I will be left infertile. On the flip side, I do know that if things don't get sorted, my joints will get damaged. Part of me wants my rheumatologist to just make the decision for me but the rational part of me knows I need to make an informed decision.

I've dropped down from 20mg prednisolone to 10mg. I feel so poorly. Next week, my rheumy will want me to come off them if I'm going to start a new medication. I'm concerned about feeling even worse. I am aware of the side effects but it's so difficult to reduce the dose because, for some reason, I am not yet seeing any side effects. It has made such a difference to my overall quality of living - less fatigue and generally feeling well in addition to improved joint symptoms. For so long, my rheumy has told me I have chronic fatigue which is nothing to do with the RA but I don't believe her because the steroids always improve things generally.

I had bloods done yesterday but I'm sure they won't show much inflammation even though scans disagree and say I do have active RA. The jigsaw puzzle pieces never seem to slot into place and I need my rheumy to look at the bigger picture, not just my latest blood test results and if I am swollen or not at that particular moment.

This is all so frustrating and not something I expected to still be dealing with. I don't know what to decide or who to trust. I feel very alone in this decision.

LignumVitae

Ah Starburst...first things first, here is a HUGE hug and a calming smile

It's normal to feel terrified standing on the precipice of change and it's not surprising that you feel alone. You don't say what the next meds options are but if you want to talk it over then why not call the lovely peeps on the helpline. They might be able to give you a nice impartial view of things.

Long term v short term is always hard to judge but I would mention to your rheumy about your infertility fears, I know when I did I got a very long and detailed explanation which calmed me right down!

Steroids are little bluggers, they make you feel so good and letting go of the, is tricky. You'll get there and don't forget that their side effects are pretty horrendous anyhow.

I too never quite get a perfect set of corresponding results where all the jigsaw fits but I now realise that is just part of arthritis, confusing and weird and bad!

I hope you feel better soon and I hope somebody comes along who can talk through the drugs with you better- I'm a mtx and Celebrex gal myself so not stepped further than that. I gave both up to try for a baby though and that was damned tough. At times I thought I couldn't do it- it's that standing on the precipice thing...I've coped though...so far

Lots of love and hugs, LV xx

dreamdaisy

Poor you, I am so sorry. I think it's relatively rare for someone to cope with more severe RA with just meth, I began with just sulph but then other meds were added, combined, changed, but I never again had just the one. I've never worried about side effects (apart from those caused by oral steroids) and fertility was never an issue as I've never wanted children. (Who the hell would want 50% of my genes? I've got 'em and loathe them. )

Side effects have to be listed but that doesn't mean they are a certainty. RA is a vile, aggressive, damaging and debilitating disease and has to be hit with strong meds. Those in turn can cause further troubles but possibly not as bad as RA left to run its course. You need to be thinking about your future with possible joint damage (I have it, it's total pants), with possible OA caused by that damage (also pants) and you also need to bear this in mind. If you want children you can stop the treatment. It may take a while to become pregnant but it has been known, it can be done and then the meds can be resumed. Of course you're feeling rough at the moment as you are reducing your steroids but they are not helping, only masking. It took me nearly a year to come off them and I will never go back on them because they lie. I feel great on them but I'm not great.

None of us know our futures whether we're arthritic or not. We can only make decisions based on the information we have at the time of that decision, that's all anyone ever does. DD

barbara12

Aww Starburst
I am so sorry you are suffering like this, and sorry I cant offer any help, but I do hope that with your Rheumy's help you will get there very soon.
Heres some very gentle hugs (((((())))I know its not much but I will be thinking about you xx

Starburst

Thank you for your kind and calming words. I feel a little more in control of things. I'm going to phone the helpline tomorrow so I'll have my head in order for my appt on Tuesday. x

dreamdaisy

That's a sensible thing to do and don't forget to list the things you want to talk over. I used to think I would remember the things I wanted to say but I soon found that once I was in the room and the conversation began all thoughts would fly out of my head, only to return once the dor was closed behind me. Good luck and please let us know how you get on. DD (who after fifteen years is still taken by arthritic surprise every now and again )

julie47

Starburst I just wanted to send you some hugs ((((())))) and hope that the helpline can help you. Good luck with tuesdays appointment too.

Love juliepf x