I usually take my MTX on a Monday and upped my dose to 20 mg 2 weeks ago. Today I have a severe headache, jaw and facial pain, joint and muscle pain and am exhausted. These are all symptoms I have had since becoming unwell, they were starting to settle. I didn't feel great last weekend either.
My question is does anyone else on MTX start to become symptomatic just before their weekly dose? Any info greatly received!
Keyes
If someone told me those symptoms out of the blue I'd say you had to consider GCA (giant cell arteritis) showing PMR symptoms - the headache, jaw and facial pain are "GCA symptoms" and the rest PMR (fatigue is both). Definitely a query for your doctor. If you get any visual symptoms at all - no waiting for an appointment, straight to the doc.
Hi PMRpro,
Thanks for your reply.
It's all a bit complicated and I didn't mention it in my post but PMRGCA has been pretty much ruled out by everyone despite me having " classic symptoms ". This has been due to a combination of my age ( 47 ), negative TAB and no immediate lessening in my symptoms after high dose pred and IV methyl pred. I have blurry vision and occasional double vision too. I have been from one end of GB to the other to try and get a diagnosis!
Feeling so rotten today made me realise that in the main the intensity of symptoms have lessened recently although they are still present every day.
Regards
Keyes
Your symptoms certainly sound like the GCA ones I have experienced. Can you find a 2nd opinion? I have been lucky with my treatment in Southampton & several people praise Addenbrookes in Cambridge. It might be worth writing to somewhere out of your area? (Assuming that is not one of these!)
Hi optimist,
I stay north of the border but have been south for a second opinion from GB expert in PMR/GCA who said no because of age.
Everyone I have seen agrees that something is wrong, they just can't give it a name!
The whole thing is very frustrating, nothing more I can do now apart from waiting to see if the MTX makes a difference.
Regards
Keyes
Hi Keyes,
Saying that you are too 'old' or too 'young' for this seems very old fashioned? My age was also a problem ..... I am too old for Takayasu's but don't have the most important markers for GCA. But I have no pulses in either arm as well as all the usual problems, so there had to be something wrong! I am now officially TAK, but some doctors prefer to call me Large Vessel; fine if it makes them feel better. There is also an idea that the Takayasu's/GCA is a continuum, so age shouldn't really be a factor.
Your doctors need to realise this....and also that those of us with Large Vessel vasculitis often have few markers in our bloods. Our ESRs can be almost normal for instance.
Also...the MTX doesn't suit everyone. After about 3 months on it, I had a few weeks of feeling that it was doing something useful - then back into a hole and feeling dreadful. It was attacking my kidneys and I had to stop.
And sorry, I didn't answer your question! But yes I did feel rotten the day before I took the MTX, and the day after as well. And my then rheumy said there was only one way to take it, and that splitting the dose or having injections would make no difference. Never got to try either, so no experience there....
Hi BronteM,
Thanks for your reply.
The whole situation is very frustrating and despite seeing and e mailing large vessel vasculitis experts I am no further forward.
The search for a diagnosis was becoming an obsession, now what I am attempting to do is give the MTX time to work and get myself fit enough to return to work in January.
The good days lull you into a false sense of security, today I am really symptomatic again after 2 good days where I hoped my symptoms were settling down.
Best wishes
Keyes
Hi Keyes,
I'm sure you are right to wait and see if the MTX works....and if it doesn't there are other things, though a firm diagnosis would help. Why do we all feel so much better when someone gives us a name? It doesn't actually cure anything!
You're right about the good days lulling you into a sense of security...I always do too much and end up flopped again. Also there is the problem of attaching every symptom to our disease. Just wasted several days convincing myself that my rash was vasculitis related - and now it's turned out to be shingles. Suppose I might be wiser next time, but I doubt it.
Do hope today is better, but please don't do too much as a result...
In Pain and my appointment has been cancelled - why are we treated this way?
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