bad flare in april reducing 8mg to 7mg tried to do it too quickly and got really tired and then really achy so went back to 8mg as my doctor told me to do didnt really get rid of all twinges .In may spoke to my doctor told her i was still having twinges but she didnt seem concerned so i trid to do the slow method only did one day then stopped as i didnt think it was right to reduce with twinges in my neck and shoulder on the left side mainly went back to 8mg which in hindsight wasnt enough. Rang doctor on 20th may up to 10mg.Had bloods done everything was normal. still not improving so rang doc on 26 may he put me up to 12mg.On the 2nd of june my doctor rings and said leave of taking your statins to see if its them thats causing the pains also she told me to ring if smptoms become worse which they did and 9th june went to 15mg which was my starting dose.had more blood tests on 14th june all noremal.Still no better in fact gradually getting worse rang my doc but she was booked up so spoke to a locum and he put it up to 20mg on 29th june he said just for a week if there is no improvement to ring surgery again and he said he would try painkillers, i am getting aches and pains in neck shoulder and arms pus aching in shoulders and legs feel heavy achy and weak i have very little energy and can only manage to do the things that are important,i would appreciate some advice as i feel really anxious in case i develop gca if this carries on much more.
bad flare: bad flare in april reducing 8mg to 7mg... - PMRGCAuk
bad flare
Just taking a step back. What activity had you been doing prior to the flare? Are you sure you haven’t got a bit of nasty stiffness in that area that needs something like manipulation or targeted massage rather than more Pred? From 8mg I felt fluey achey and very tired due to the adrenal issues one gets at this level and my shoulder muscles were quite intolerant of being used heavily, even carrying a shopping bag. It wasn’t a flare. Also, 20mg is quite enough to make everything weak and heavy and the muscles even more vulnerable generally. Just a thought.
hi snazzyD Thanks for your reply but to be honest i dont know what is going on in my body.in the wek when i went to 7mg one of the days i did do too much and stupidly realise that now and my doctor suggested going to 7mg as i have been reducing slowly up until then.I was doing ok till then .doctor has referred me to a rheumatologist but think it will be a long wait because of covid.
Others with more experience and knowledge will be along soon, but personally I'm not surprised you've experienced what you have.....all that jumping up and down doses, not to mention your doctor suggesting you suddenly stop taking the steroids (which definitely isn't normally recommended if you've been taking them for some time and could be quite dangerous!) must all have sent your body into chaos! I get withdrawal symptoms every time I decrease my dose...even with a slow taper. I get muscle and joint pains almost immediately which is one of the reasons I know it's withdrawal and not PMR. PMR pains are different in that they apparently tend to re-emerge about 2wks after the drop in dose. Fatigue and breathlessness has also been a side effect of the pred for me and I've had to accept that for the time being I'm capable of far less than prior to diagnosis. Adequate rest is the key too! If uou push yourself there'll be consequences!
I'm not qualified to speculate what's going on with your body, but your medication has been so erratic that your body is probably totally confused. I can't advise you what to do but I know there are other members who probably can.
I do hope you get sorted soon.
You are never reducing relentlessly to zero - you are looking for the lowest effective dose. However - with all the jumping about your poor body hasn't a clue where it is at and only one thing should be changed at a time.
Has stopping stains made any difference? That may take a few months to show up.
And as Snazzy says, it may not be the PMR - it could be a muscle strain, especially as it is more on one side. And are you sure you aren't trying to do too much? Or things that make it worse - I dare not use a vacuum cleaner or sweeping brush/mop for more than a few minutes for example.
hi PMRpro thanks for you reply .Stopping the statins hasnt made any difference at all.ive been on them for about two years.Ionly hoover for a few minutes twice a week and make myself a meal at night and peg washing out i live on my own .i have carried my food shopping a couple of times but i only live a few yards from the supermarket.I dont have much energy at all.
Which statin? Omeprazole?
The stroke clinic my Cousin attended recommended bowl of porridge and 1 whole orange (not juice for breakfast this lowered her cholesterol within six months and is still down and she still have porridge and an orange for breakfast. Might be worth trying then be tested later?
Hi it is atorvastatin.will try porridge and an orange as suggested.yes i will get tested again later as you suggest.thanks for you reply.
Atorvastatin is one of the ones implicated in PMR-like adverse effects
PMRpro has put it succinctly however you might just like to read up on these, in case your medics decide to tell you to take statins again.
nhs.uk/conditions/statins/s...
Extract
"Like all medicines, atorvastatin can cause side effects in some people - and different statins affect people in different ways.
One rare but serious side effect is unexplained muscle aches and pains, tenderness or weakness. This can happen a few weeks or months after you first start taking this medicine."
myheartsisters.org/2009/10/...
You might also take a look at this Side Effects in Woman.
It sounds like you were in too much of a rush to lower your dosage. I hope you will get over your flare easily, plenty of relaxation and pampering recommended. When you do get back to 8mg - I really struggled there. There seem to be sticking points around 7mg and 3mg. Others may explain, adrenals? I got through the difficulty with the dead slow method, which is probably what you were doing previously!
First week, on one day, I took 7.5mg. that's 2 tablets (5mg + a 2.5mg) on other days I took 8mg as usual. The next week, on two days, I took 7.5mg and 8mg on other days, and so on. Then when I finally got to 7mg, I stayed there for a few weeks until it felt OK. I'm now at 2mg and waiting for what feels like the right time to maybe try for 1.25 (half of 2.5 tab).
HiQ-owl yes i was rushing it.and doing too much.Up until then i was really careful.IWill try your method of reducing its nice and slow.IM worrying that the doctor wont be able to sort me out i feel really negative at the moment it takes awhile adjusting to the fact you cant do the same things as you used to do.thanks for your advice.
Good advice so far, about leaving off doing some of the things which might be aggravating the pains in your neck and shoulders. However it is important to maintain a level of activity which keeps as much of your muscle fitness as possible. Can you get out for a short walk most days, walks where you don't have to carry shopping home? When you do shop, even if you are only a very short distance from the supermarket, using a wheeled shopping or utility cart might be a good idea. It might not be a bad idea to ask your doctor, next time you have the chance, whether there could be other reasons for your fatigue besides PMR/pred. Presumably most possibilities would show up on usual blood tests, but they might not always test for everything. My doctor has to add ferritin to the order for my bloodwork, for example, as I tend to have low iron levels. When I complained of fatigue she did in fact test for lot of things (and only the low iron showed up, thankfully).
Not to second-guess the doctor, and I know covid makes so many things more difficult, but I'd have thought a bit of appropriate physiotherapy would be more beneficial in the long run than adding extra painkillers.
Hi heronNS thanks for your advice it is much appreciated.I told the doctor about having fatigue i will find out from him whether they checked for anaemia.I still think because i didnt up my dose enough after the week on 7mg the inflammation has slowly been creeping in and building up and thats why its not working i read on this forum where one lady had to go up to 30mg to sort it , is it common to have to go that high.I have been on 20mg for 4 days and im thinking as if hasnt made any difference go back to 15mg.I just dont know what to do.
Fatigue is an inherent part of autoimmune disease - and there isn't a pill to cure the ill unfortunately. It must be managed by pacing and resting.I agree with HeronNS that you probably may need to look for other causes and cures of the pain - just throwing painkillers at it doesn't sort the underlying cause if you have muscles that are in spasm. Nor does adding more and more pred.
healthunlocked.com/pmrgcauk......
Thanks for the info PMRpro im going back down to 15mg as ive only been on 20 for 4 days so i shouldnt get withdrawals should i.ive got to ring doctor on tuesday to see what they are going to try next.do you think im doing theright thing going back to 15mg.
It isn't a good idea to just add and add pred - so if 20mg is no better than 15mg there isn't a lot of point taking that much, Patience and lifestyle management are as important as throwing pills at it.
PMRpro thanks for your reply im begining to realise that.im still learning about this disease i know it doesnt kill you but i realise i have to learn to live with it and i will be limited inwhat i can do.many thanks for your advice.
vangelis8 and Hidden - are you the same person?
Yes i am.
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