Help! Think flare out of control

Bones, joints and muscles
1

Hi. Back in October,  I think had a flare whilst trying to reduce from 9mg to 8mg. At first I thought the pain was just withdrawal symptoms and just got on with things (am in the process of moving house). However, the stress levels rose dramatically due to incompetent solicitors and threats from developers. It's a long story so I won't bore you with the details other than to say that finally commonsense prevailed and it was agreed that I could exchange

on19th Dec and complete on 6th Jan. however, I am now left with constant pains in my shoulders and arms which is not relieved by the pred. Currently I

am taking 15mg and have great difficulty in raising my arms above my

head/reaching out front/ and gripping things. It is now having a huge impact

on my life (dressing, driving, packing). I would increase dose but do not think I have enough supplies to carry over until I can register with a new gp (am moving to Oxfordshire from Harrow). Current gp not interested any more as I am moving away. Happy for me to stay on 15mg but no more. Suggested I take up light exercise instead. I have been reading all the recent posts about methotrexate and worry that new GP may prescribe something I do not want to take. Also, that new GP may not even understand PMR anyway. Is there a way of vetting doctors surgeries? Probably not. But I live in hope. It's all I have now. 

2

Hello Kay, what a pity, to get so far then be back up to 15 mgs again. This condition is so frustrating. Sorry I've no medical training so I will tell you what I did when faced with very similar circumstances. 

I was diagnosed in December 2013 although I had symptoms since the September. I was so relieved to finally attend the rheumatologists appointment after my GP said that she couldn't for the life of her think what was wrong with me. By the way I presented my GP with all the systems of PMR, although I didn't know it at the time, my ESR and CRP levels were sky high and by the time I attended the rheumatologist appointment was in so so much pain that I could barely stand, sit, walk, sleep, well you know what I mean. 

After attending the rheumatologist, who was very very through I took my 1st dose of prednisone and within 4 hours I was almost backto my old self. After I'd arrived back from the rheumatologist I looked PMR online and firstly couldn't believe that this condition I had was by no means rare and that a GP of my gps age simply could not tell I had it from the symtoms astonished me. Then I looked up all about the treatment and how long I would potentially have this condition for and immediately drove into town and got myself booked into another surgery. I have to say that at that point I had no idea if the surgery was any good, but when I handed back my form I was immediately offered a new patient appointment with the surgery nurse and because I was on medication I was given an appointment with a dr. The nurse spoke with me at great length about PMR and when I told her I was so shocked she knew so much she replied that lots of elderly people have it and although it may sometimes throw me the odd curve ball the condition could always be managed. Then I visited the GP and she prescribed me omeprazole as I also suffer from a sore in my stomach, recommended vit d, c, calcium and magnesium.

i have to date been so happy with my surgery. I have ESR and CRP blood tests very 3 months and all my clinicians have pretty much stuck to the Bristol plan, although I was only on 10 mgs for 6 months and not a year. I then reduced down to 9 mgs all ok. Then the trouble began. I reduced from 9 to 8 mgs and suffered a flare up. I tolerated it for 16 days then upped my medication back up to 9 mgs and then made my second mistake. Because the 9 mgs cleared up the flare after about 14 days I thought I'd try again. Big mistake, flare up number 2, I put up with this flare up for about a week then upped my dose to 10 mgs so that I was taking a high enough dose that would really stamp on the flare up. I've been on 10 mgs for 2 weeks now and have no intention of reducing this dose for at least a month following the subsidence of the flare up symtoms. So far they have cleared up well and I'm pretty much back to my old self but as I say, 2 months minimum before any attempt to reduce and then I will reduce by .5 mgs not a whole mg. so that will be one day 10 mgs next day 9 mgs repeat for at least a month then and only if I feel fine I'll then take 9 mgs for at least a month, so on, and do on.

i have no intention of taking mtx and as I have said before I will fight tooth and nail to not be put on it.

what I did re medication, as soon as I was diagnosed I visited my original Dr surgery, obviously not booking an appointment with my original Dr and requested a month of prednisone as I was going on holiday, not true but I wanted the tablets and also at that time had no idea when I was able to get an appointment at the new surgery, got those tablets then as soon as I had the appointment with the new surgery asked for a prescription for the same medication. At that point they had not received my notes from the old surgery. But re your present Dr. You have not left the surgery yet so they are duty bound to still treat you, infact they are duty bound yo treat you until you have filled in and signed a new practice form. Perhaps try what I did and book an appointment with another Dr at the surgery and like I did say that you are going away and that you require medication to cover you for your time away. 

Re the question of you being on 15 mgs and that dose not making any difference must be worrying you, it would me. Hopefully soon some of the more experienced contributors will reply with some sound advise, I feel for you as it sounds that the pain and stiffness is back to how it was pre medication and I know that that is a situation I simply would not want a return of. What I have also done us research PMR and its treatments so if at any point I'm not happy with a new suggested course of treatment, that is mtx, forget about that, I have the knowledge to argue why I will not change my treatment presently. I' m sticking to the only been treated for a year, let's give the prednisone a bit longer yo work, only had1 flare up which is quite common at that level and I'm not interested in changing from one drug that has has bad enough side effects to another that gas even worse ones. 

Stand your ground. Good luck, christina

3

Kay, I am sorry to hear about your dilemma. I find that stress really does bring on a flare up. You have a right to refuse drugs from the Doctor, and you have a right to ask for whatever you need, the Doctor is obliged to help you but he may refer you to someone else if he does not agree with you, be firm in what you want. For now all you can do is breathe deeply and try to relax , take time out for yourself, have a massage, do some gentle yoga or qi gung or tai chi, but do take some YOU time.

4

Oh dear you are having a time of it.  If you go to the new gp with all your background ingormation and explain about PMR they may already know about the condition. I am having my first appointment at Endocrinology on 8th January and am at present on 20mg of pred.  I will be asking a lot of questions (so going armed with pen and paper).  I hope you get sorted out because the pain and the inconvenience of it is unbearable. Good luck.

5

This is for both Kay and Christina:

Follow this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

and in posts 4 and 5 of the thread you will find a "dead slow and nearly stop" reduction plan. A few of us worked out similar programmes and found we could get to far lower doses than before with the usual sort of reductions. Above 10mg most people will manage with 1mg at a time - below 10mg a 1mg reduction is 10%, and increasing. Many people have used this concept and had no flares - or "steroid withdrawal" problems - while getting to much lower doses.

Kay - I'll lay odds this is 90% the stress you are under. There is obviously no way of changing that just yet. "Take up light exercise instead"? What the xxxx - don't want to offend or be struck off!!!! If only, if only! PMR makes your body intolerant of acute exercise - and at present you have far too much of the wrong sort to do.

I imagine your finances are a bit stressed but could you afford a Bowen therapist consultation? Or even a private rheumy? It's asking a lot I know. There is an excellent PMR specialist at Ashford (worth travelling to by the way) who also does private work. My experience of him is that he might come up with a plan of action which might include a higher dose.

The Bowen I suggest because it may be more than just the PMR and that is something that I found helped manage the back and shoulder pain I had over and above the PMR which was due to spasmed muscles and myofascial pain syndrome. I have also had other treatments but they aren't easily available in the UK and I know several people with PMR who have used Bowen with great benefit. 

 I'm also sending you a pm.

6

Hi Susan. Thanks for your reply. Yes the stress actually coincided with the reduction which triggered the flare. But I didn't realise this until it had taken hold. My mind was on other things that needed to be done at the tiime. With hindsight, I should have sought help earlier and now know better. I am pacing myself now and what I cannot get packed the removal company will have to do. Only another week or so and I can relax. Lol.

7

Thank you Christine and to all the other responders. Your help and support is very much appreciated. 

I have thought about your views on my situation and you are right, my current gp does still have an obligation to treat me and so I will go back for help. Also, I should not be so quick to dismiss potential gp surgeries before I have checked them out. Stress you see has a way of clouding the mind! But this forum is a godsend ..and a mine of information and help. Bless you all! 

8

Good luck Kay, this condition really is so frustrating. Re the GP, well it's pot luck but I cannot believe just how lucky I've been especially after such a disastrous start. I've got my fingers crossed that you will have such good luck too. You see we all want this condition to go away Asap and because we're so scared of flare ups or unexpected new symptoms that may or may not appear we all sometimes behave irrationally and especially me, always think the worse, but that's why this forum is great because we all feel scared and insecure, they'll always be someone who's been through what we feel too and they always contribute to our query and help put our minds at rest. I hope you enjoy  your new house. Christina