My Dad aged 79 has been suffering this awful condition/disease for four years now . Prior to this he was a very fit active 75year old always helpling others with jobs , taking my dogs for walks and helping my Mum with house chores . He spent 6 and half weeks in hospital and they found nothing .He didn’t get a diagnosis for 6 months but then his Gp started him on 20mg pred.which started to help , he now has neuropathy in his feet and legs which causes pain /stiffness and struggles to walk .fast forward 3 1/2 years on approximately 20 mg pred he eventually got down to 5mg at Christmas 2019 . Then he had a cold and chest infection which it caused his symptoms to worsen a great deal so back up to 20 mg with no effect up to 30 no effect . So reluctantly tried 50 mg pred a little better but coming down now at 30 mg but he feels dreadful with this DEADLY FATIGUE struggles to walk eat etc. Having a shower absolutely exhausts him. Last week he had a telephone consultation with his Rhemeatoligist and he said he would like him to try different medication SULFASALAZINE . Really quite scared about this . Any advice welcome .
Thank you
Written by
chaliesmum
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Every instinct says to me less not more. Doctors bless them are trapped on a path that leads to over prescribing. I am in no way medical. But I was a daughter. Research everything. Bless you all.
I would want the rheumy to discuss it in detail - because I think it is possible he may be suspecting this isn't "just" PMR. 50mg should make a significant difference in any PMR - anything above 25mg is a very high dose for it unless there is some suspicion of GCA.
The rheumy I saw in England was determined to make mine anything but PMR despite being pretty textbook symptons - and wanted me to start sulphasalazine for inflammatory arthritis. I was about to move to Italy so I never did start it as it requires close monitoring by a specialist and I didn't have one here. Many people use it for inflammatory arthritis and are fine. It is unlikely to help in "just" PMR.
Hi, it obviously an attempt by the rheumy to get the pred down as far as possible. Sulfasalazine seems to be used with some success for other conditions like RA, but has mixed results from what I have seen on here, with GCA and PMR. The side effects include flu like symptoms, stomach and appetite issues too. Hopefully someone who has had some success may pop up. It's used to treat Crohn's if I remember rightly so in terms of side effects it may be worthwhile lurking in those sight and searching posts.
It can take weeks or months to recover from a chest infection and a significant flare. While a thus is going in its all going to be by phone consultation with no bloods unless he goes out, which he shouldn't really be risking. Maybe see how he is over next couple of weeks. Did he get any relief from feeling bad at 50mg?? Deathly fatigue has been a part of my PMR from the start and has raised its head with flares, then settles a bit but I don't think yo yoing will help your dad. It doesn't help many people. The point is it may help him taper more quickly (maybe not), but he may be able to do that without a little helper that adds more side effects.
I hope you get enough info to help him make a decision. And that the fatigue drops off. 🌻
PS - the deathly fatigue is normal for autoimmune disease and for some people high dose pred also leads to fatigue - not everyone gets the manic "how much can I do?" effect.
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Isolation question: caregiver who works outside the home
2 ? -eyes and weak legs
Interesting visit with Rheumy - fat not edema!
