I write on behalf of my struggling Mum who's had polymyalgia for over 10 months. She is in a lot of pain and struggling to cope mentally with the ongoing and painful symptoms. I'd appreciate anyones comments on surviving this and how you felt going through it too. Her steroid treatment is being steadily reduced, but the side effects of this seem so awful. I do feel for her.... any comments are appreciated. Many thanks. =)
Hi Bev, your poor mother. There is really no need for your mother to be suffering pain, her steroid dose is really not enough to keep the inflammation at bay. If you can you coud go with her to see her gp and explain all what you have stated above. Please keep in touch and hang around this website as you will get loads of information and support. Good luck. Pat
It is without doubt one of the most painful and chronic illnesses one can suffer, and the only thing that alleviates it (steroids) comes with its own problems. The only plus side is this forum which is full of fellow sufferers who can not only provide support and companionship and advice but maintain as happy an outlook as is possible.One thing which will be highlighted by all is that the reduction programme for the steroids must not be too rapid. What is your mother's current dosage and what is her reduction programme? I am afraid it is a very debilitating and depressing disease. People have eventually shaken it off but it is a long process. You will however find loads of support and advice on this forum.
It sounds very much as if your mum shouldn't be reducing the pred dose, certainly not any further and should probably be at a higher dose - the initial dose is one that is enough for most people to get at least 70% improvement in their symptoms and then the idea is to reduce the dose to find the lowest dose that achieves the best result you got at the start. It isn't a case of reducing relentlessly to zero - unless you are incredibly lucky.
This is a link to another thread on this forum where you will find links to a load of resources with information and some with stories from other patients that you can sit and read rather thanjust asking questions - then you can ask more specific questions.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The northeast of England PMRGCAUK website is particularly good for that - there are stories on there. Their forum has a section called "Eileen's Input" which has a compilation of posts with questions and their answers and explanation that people said they found particularly helpful and there is also an FAQs section. If you join the NE group (you don't have to be in the NE) they have an info pack they send out. There are also support groups in various parts of the country - there may be one near you, where do you live? Meeting for a cup of tea with people who have the same problem is a great help.
Tell us more about your mum, her age and her PMR and pred experiences and we'll try to help here - but I could write for hours and still not answer YOUR problems. I have had some fairly horrid pred side effects - weight gain, a superb beard, muscle wasting - but I can honestly say I had none that were worse than the 6 months I had between my PMR going totally haywire after 5 years of being manageable without pred and being allowed to try pred. You can manage weight gain with discipline and even lose weight (I've lost 40lbs) and many other side effects can also be dealt with when you know how.
Hello bev, gosh things do sound desperate but as Eileen says perhaps the preds are simply too low to cope with the current level of inflamation. Please do as she requests, let us know more info about your mother and hopefully we can offer some advise.
In the mean time do take care of her, this is a real trial of a condition but get the medication right, approach the condition right and much of this condition and its side effects can be alleviated. We hope to hear back from you soon. Regards, christina
Bev - I'm sending you a link by private message as I can't do it here without it being moderated.
PMs are notified at the top right corner of this page - they're just posts only the recipient can see.
Hi Bev,
The other ladies have pretty much said it all but I wanted to welcome you to the forum💐.
10 months is not a long time to adjust to PMR. It can be a very painful and frustrating disorder. Most of the pain can be managed, the frustration is a little more difficult.
Your Mum is lucky to have you to advocate for her so when you talk to her doctor go with all the information you can about prednisone dosage and reduction. None of us like to take this drug but it allows us to have a quality of life, when taken properly, rather than a life of pain which can even include being wheelchair bound. Most doctors don't seem to understand that. The information you need to show him/her is on the link Eileen gave you.
We are very lucky here to have people like Eileen, Mrs. O and others that are very knowledgable about PMR here and on the UK.North East site. We count on them and our fellow PMRer's for information but also get a lot of support from people that understand what we're going through.
Best wishes to you and your Mum. I hope she finds the correct dose of pred. soon to ease her pain.
Hugs, Diana🌸
thank you! i'm passing these messages on to mum for support.
x
Bev, so sorry to hear about your Mum. It does sound as though she may not be on a sufficiently high enough dose of steroids to control her present symptoms if she is experiencing a lot of pain. If she was someone who had high markers of inflammation in her blood tests at diagnosis then her GP should be repeating these tests regularly and definitely before each reduction in dose to ensure that the markers are normal before further reducing. Do let us know what you mean by her "awful" side effects, in case we can offer any suggestions to help her with these. Also, if she hasn't had one, she should be given a Vit D blood test to check her levels as any deficiency can lead to pain in similar areas to those of PMR. A short course (around 3 months) of Vit D 3 can be prescribed to bring her levels up to normal.
Gosh what a shame but I know how that is as I am having exactly the same thing reducing my steroids , I feel I have gone back to the same pain as in the beginning when I first went to see the Rheumatologist with the PR, I can't move as I am so stiff again, my collar bones are aching all the time and around my neck area, pains in head, stinging nerve pain all over, fed up, hope your mum gets better, I think it's the weather here i the UK
Hi Bev....I too am new to this discussion. I have PMR and RA and OA and am on RA meds as well as Pain pills for the RA and OA but the only thing that seems to help the PMR is the Pred. I take 10mg once a day down from 20-----slowly. I seemed to have a problem going lower. I get to 9 and start getting stiff and frozen all over upper arms, shoulders, neck and middle upper back upward. Cannot lift anything...and pain is horrendous. If it's not PMR. It's the RA and I find I can just about tolerate moving even with the pain meds. I have had hair loss, 60# weight gain , rashes! skin thinning and dry skin! mouth and eyes. I had used a cane for about a year, but just got a walker as I am getting worse, not better. I hope your Mom gets better. It takes a long time to downgrade the meds. But 1 mg at a time us the best way....I have had PMR for two years now and have learned a lot of patience.. But doctors seem to lose interest if you are showing progress, as if it's your fault. Remember no one, not even the doctors, know how your Mom feels. If she thinks something's not right trust her first and what she feels...good luck....hope to hear good news from you....
Then you have reduced too far - if the pred gave a good result at 15mg you are now looking for the lowest dose that produces a similar effect. Taking pred cures nothing - it is ongoing much like diabetes and requires long term management, stop taking the pills or take too little and the PMR symptoms will return. You need enough, but not too much. The weather can have an effect - but it shouldn't be that much.
On the other hand - if you DIDN'T get a decent result with 15-20mg the question must be asked whether it is really just PMR. And you are unlikely to get 100% relief from all the problems - but it should be 70% or better.
Even 1mg at a time from one day to the next can be too much for many patients. I also always got stuck at 9mg until I worked out the "Dead slow and nearly stop" reduction plan which you will find in the replies part of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
And yet again - many people have found they can control their weight fairly well and even lose weight while still on pred as long as they cut carbohydrates drastically. Personally, I have lost 40lbs of weight that was mostly due to taking Medrol though I had put on some weight just with PMR because I couldn't exercise normally for 5 years.
Thank you to everyone who's commented and messaged about this post. I've been amazed at the responses and support from people, I'm guessing, all over the world? with this problem. My Mum's found it a great comfort too so far... so thanks to all. =) Much appreciated. Wishing you all well.