Total frustration!

[Morant]

hi, your forum has always given me sound common sense advice. I would like to thank you all for the understanding of this condition which you pass on to others. I have been on Prednisilone for four years now and my Inflammatory markers have not gone down. ( highest 79/55). My steroids either reduce or decrease but do not stay consistent.(45mg being the highest dose). As the four years have progressed I have become weaker and less mobile,relying on my husband to do housework,cooking etc. I have now got to the stage where I am on 10mg but feel no better. Because of the side effects of the steroids other problems within my body have come to the fore. All have been treated separately by consultants but still the problems keep coming. I take 14 different medications, which in itself causes problem. I feel as if there is no way off of this merry go round, not just for me but for my husband also. I have no motivation, I spend every day resting and sometimes a walk to the bottom of the garden. Is there anything that I could ask GP to try that they may not have thought of or is there anything I can do to rid me of this frustrating illness .

[nallufl24]

Actemra is what helped me. I’ve read here that Actemra is only given for 1 year in the UK. I’m in US and Actemra has been a life saver. It got me off of prednisone and I am somewhat living a normal life. As with all drugs Actemra also has side effects but it couldn’t compare to what prednisone was doing to me. I hope you find the help you need

[PMRpro Ambassador]

You ARE under a rheumatologist I assume? Is your diagnosis really PMR? Because it doesn't sound as if that is correct - one of the criteria for PMR is a good response to moderate dose pred.

[Morant in reply to PMRpro]

no, I am not under a rheumatologist,although my GP ( my third GP)has said I must go to see one but hasn’t as yet done anything about it. What puzzles me is it PMR making me like this, my medication or a combination of both. I had thought I should be getting better by now going up not down.

[DorsetLady PMRGCAuk volunteer in reply to Morant]

You do need to see a Rheumy-and soon -your GP needs to get their brain in gear -and all your medication does need to be looked at -seriously.

All too often people are put on meds for a raft of different conditions and there isn’t a proper review.

[PMRpro Ambassador in reply to Morant]

I have to suspect it may not even be PMR - GPs often misdiagnose and for any patient who doesn't respond as expected to pred or who needs unexpectedly high doses at ANY point needs to see a specialist who has access to better knowledge about alternative diagnoses and testing. DL has been very polite! Your GPs need a kick somewhere the sun don't shine!

PMR can last a long time, can be very refractory, but what you are describing doesn't fit with even MY experiences. I haven't been far for the last 6 months because back problems and having tendinitis in BOTH ankles made walking a pain so know what being almost housebound feels like and your situation is far worse. Not good enough GPs - even with Covid as a get-out.

[SheffieldJane]

I can completely relate to the position you find yourself in. The so called cure being often worse than the condition itself. I have rejected so many medications with horrendous side effects. The ones I have accepted for blood pressure for example contribute to my energy being sapped. The one steroid sparer I took Tocilizumab/Actemra has left me with Diverticulitis which is life limiting, even though I stopped it 4 months ago after a year. I remember my Granny’s GP reviewing all of her medications late in life and throwing most of them out. I feel that somebody should take charge and do that for me. I have a great relationship with my Rheumatologist who really has a patient centred approach but side effects are dealt with kind of randomly by the GP, as if they were isolated conditions. My very knowledgeable Endocrinologist has conflicting priorities about my Adrenal Function ie. Compared to fighting the inflammation of PMR/GCA/LVV. I am not sure if my Pred dose 7 mgs, is doing anything that helps how I feel anymore. I think it’s an impasse that many long-timers can reach. I am determined to untangle this ball of wool and get closer to something approaching wellness. I feel like the old woman who swallowed a fly. I am abroad currently and sadly aware after airport assistance, just how far I have deteriorated. When I return, I believe the key is to slowly dispense with my reliance on Prednisalone- the source of most of my troubles and to start re-building my health and stamina via diet and a programme of exercise. Anything that doesn’t involve taking on board more chemicals. I refuse to accept that “ this is it” now.

[Siena62]

I really do think that you should be under the care of a rheumatologist. In fact - and I’ll probably be moderated for saying this - I think that your GP practice has been negligent in not referring you much, much earlier when it was clear that you weren’t getting a good response to Prednisolone. As has been said above, you might not even have PMR.

Please insist that your GP refer you without further delay and put in a complaint to the practice at the same time.

[DorsetLady PMRGCAuk volunteer in reply to Siena62]

No issue from me on your comments re GP surgery...agree.

[PMRpro Ambassador in reply to Siena62]

Why would we moderate what we have said less diplomatically!