Help

I was diagnosed with GCA and PMR in dec 2014 after 4 months of the worst headache of my life. Straight onto 60 mg prednisilone a day. Am now down to 35 mg a day but can't seem to get down any further with out the headache coming back with a vengeance.

Can anyone tell me if this ever gets any better.

I felt really well for the 1st month I was on the steroids but now with the pain from the PMR and side effects of the steroids I never seem to have any Relief

I am still trying to be as active as possible, I have a 24/7 business to run so no option this is what's keeping me going.

Has Anyone any ideas on self help

8 Replies

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  • Hi lilymaerose

    There is a system for going down slowly called dead slow to stop, PMRpro gave it to me, I am sure that PMRpro will see your note and pass it on to you. I am no good at computers or I would send you the link sorry.

  • Hi lilymaerose,

    Welcome to this forum. The 1st month you always feel good, in almost an instance all your pain is gone, the steroids make you full of energy and feel you can do anything. Then reality sets in, and you need to be a bit more careful with reductions and your work load!

    You may have felt okay getting down to 35mg, but before you reduce each time you must ensure that each dosage has controlled the inflammation, and if you decrease too quickly sometime that's not happening, so eventually your body says "stop I can't cope"

    Suggest you stay at 35mg for longer than you have with the other reductions to give the steroids chance to get a hold of the inflammation again. Then consider smaller reductions - if you were doing 5mgs a time, try 2.5mg. And try a slower reduction plan, not an "overnight" drop- I found them too much. It may seem a slower process, but it's stops the yo-yoing of tablets, which is not good for your morale.

    As notnice says you can try PMRPros v. slow plan, or even what I suggested to notnice in her recent post re Advice on reducing Pred.

    Whatever you do, you must remember you cannot do everything you did prior to PMRGCA, and even though you have you own business you must learn to pace yourself and rest when possible. Good luck DL

  • I was diagnosed with GCA/PMR in November 2014 and had the headache too. I was put on 40mg for 8 weeks then reduced to 30 then 20, have been doing a bit of yoyoing though but hoping this time I will be ok on 20. I have found you must go slowly on the reductions AND slowly with your lifestyle. REST is so important but it must be hard if you are working, I retired just before diagnosis thank goodness! Do look at the PMR/GCAUK website so much great info there also patient.co.uk on the pmrgca bit that is great too.

  • Just a thought. While on steroids for a couple of years post GCA also was given daily blood thinner aspirin 75mg and never had headache. Now off aspirin as told clopidogrel better for stomach. Headaches came back! Coincidence? Take it slow and steady like they say and good luck.

  • Most of it's been said - and here's the link for the slow reduction

    healthunlocked.com/pmrgcauk...

    But above all - you MUST rest. You have to give your body a chance to heal itself. GCA is a serious illness and the pred doesn't really "cure" anything. It is managing the symptoms until the underlying autoimmune disorder that leads to the immune system attacking the body and causing inflammation burns out and goes into remission.

    On the other hand - you talk about the pain of the PMR: if you are on 35mg it is unlikely it is PMR pain as such. that should be managed with a max of 20mg. The headache is a sign that the inflammation in the arteries supplying the head is by no means under control and you therefore need that higher dose and if you have PMR pain then other arteries are involved and compromising the blood flow to the muscles. If you keep reducing in big steps and then having to go back to a higher dose you are getting into a yoyo pattern, allowing the fire of inflammation to burn brightly again - every time makes it more difficult to get under control again, like any wildfire.

    It is all about priorities. I do appreciate your need to work, whether it is psychological or financial - but it is overtaxing your body when it is ill.

  • Thank you all for the input, interesting about the aspirin, I have always been one of those people that can't take it, but may give it a try.

    I will definitely follow instructions for the reduction of preds, that makes sense to me. Been reading lots of the other comments on the forum and found it really helpful, I think a lot of what I am suffering is from the steroids.

    A few of the symptoms are making sense to how I have been feeling

    Fuzzy head, neck and shoulder pain, cramp and muscle pain in feet and legs

    I also have chronic arthritis in both knees and copd from asbestos damage which I was managing well until GCA & PMR.

    took the advice to rest today as well, I do try to pace myself, I love my business, it's a dog hotel, so very therapeutic and good for me, and great staff who look after me well

    Feeling much more positive so thank you all for your feed back.

  • Can anyone clarify something for me. I am under the impression that Gca and PMR will cure themselves after 2 to 5 years is this the case or have I got it wrong as I read on the forum it does not cure itself but only goes into remission and can come back when ever.

  • Both GCA and PMR are only the symptoms of an underlying autoimmune disorder which makes your body's immune system not recognise your body as self and so it attacks the tissues as if they were invading viruses or bacteria. This underlying disorder continues - the pred doesn't influence it at all, it just allows you to manage the symptoms.

    Autoimmune disorders sometimes will burn out and go into remission - but there is no real time scale and while doctors often tell patients it will "burn out" in a few years there is no guarantee. In some people it does go away and quite quickly - some experts think about a quarter of patients will be off pred in a couple of years or even less but they are at a higher risk of a relapse at a later date. About a half get off pred in up to 5 or 6 years. The other quarter may be on pred for much longer, albeit a low dose, and some need a low dose for life.

    Strangely, although GCA is really the more serious version of this illness, it seems the more likely to go into remission in a few years and I know a few younger women who have had GCA, have been able to get off pred in a couple of years and are back to normal. On the other hand, although there are people I know with PMR who did much the same, most of them have taken longer - but of course the people you meet in forums and support groups are probably the people with more severe problems and are possibly not entirely typical. I do know a few people on or past their second episode of PMR - and all say it is/was totally different from the first. They also generally say that they didn't take things easily enough - and allowed themselves to be overtaxed and/or overstressed.

    The people who get it more than once are definitely a minority though - but with all autoimmune disease it is there, hiding, and it is possible for it to rekindle at a later date.

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