My mother who is 82 has been suffering withPMR for about 6 years . She has been up and down various doses of Pred trying to get off them due to bad side effects . Skin rashes , sore eyes , terrible headaches , she has very high blood pressure as well regardless of Pred. Swelling of feet , joint pain, prob more I can't remember.
Not sure if some of these are just symtons of PMR , it's hard to discern now as it's been so long thar she's suffered pain .
So really I'm just trying to find out if there is anything else she can do or just help her relieve the pain. At the moment it seems that it's the constant severe headache that's wearing her down. The Co codamal don't touch the sides , she takes at least 6 a day .
Do antihistamine s help , and worth trying ? Any other advice would be great m I think she is taking 10 mg of Pred ATM.
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Sorry your mum is having a tough time. Many report exacerbation of new or pre-existing osteoarthritis etc. There is, apparently, a pmr headache which i get for a few days at a time. I see she is on 3x daily doses if co-codamol. This itself can cause a headache. HOWEVER, constant severe headaches that painkillers dont help at all should be checked. Is it on one side, the scalp or back of the head. Does her scalp or jaw hurt. I am sure others will be along to advise. Hope you get some ideas on moving forward.
Sorry to hear about your mother. Some of the side effects can be a bit nasty, but most can be controlled, I guess you have spoken to her doctor about and not just accepted this is what it is. Is she on BP tablets? Uncontrolled that can cause headaches.
If she still has joint pain, I would say her PMR is not controlled properly, and certainly that’s not helped by constant yo-yoing of her dose as you imply.
However the thing I am most worried about is the headaches, that could suggest she has GCA as well (assuming her BP is under control) and if co-codamol is not helping then she needs to seek medical advice.
Unless her headaches are sinus related, antihistamines won’t help either I’m afraid.
Please make an appointment for her ASAP, and should she get any visual disturbances then off to A&E.
Hi thanks for reply . She has been diagnosed with PMR . She does have very high blood pressure has it for years. Takes medication for it , not sure what it's called. The hospital did mention to be aware of GCA ,but I think I shed scared of going onto a high dose again of Pred .
She did get her eyes checked out recently and nothing wrong. But at times are very painfull , red and weepy. So again probably the Preds.
She thinks by going back to a high dose it will make life too unbearable , she has already said she cant go on.
I think private is the way forward , you need to get very close and prompt care I believe when it gets this bad. Yes she has been unlucky , both knees replaced with poor outcomes a few years ago , not helping her now with mobility issues. What's the procedure with going private. how to find a good rheumatologist familiar with this illness ? Thanks again.
Thankyou for posting again. This is my reply on the other thread:
My personal suggestion would be that your mother needs to get a second opinion from a good rheumatologist because by the sound of things it is not necessarily "just" PMR. If it is then she isn't on enough pred to manage the symptoms. There isn't really any other option for management of PMR - and no, antihistamines aren't relevant here.
Whereabouts are you?
Otherwise I would say exactly the same as the other 2 replies. Pred and cocodamol can both cause headaches and so can GCA - but it does sound as if she has been messed about rather.
Thanks , she lives in Northampton and yes she has spent a lot of time at various doctors. The stretched NHS just cant seem to cope illness like this. When it first started it took about 2 weeks in hospital (after entering casualty) to get an answer what was wrong with her.
She did not or had not got on with Pred. That's why I was hoping maybe rd her ex was another way .
Sadly you never get to see the same GP so you feel frustrated with explaining how you feel each time .
She rarely gets to see a consultant rheumatologist, each time they have put Pred dose up which results in extreme symptoms appearing, mainly the headaches , foggy brain , skin problems .
At 82 it's so difficult to understand what's been said to you and to relay how you feel. She is so depressed as even exercise is too painful , no strength in her legs muscle weakness maybe again a side effect. Of Pred .
If the medicine is making you worse what can you do ?
It is hard when pred isn't well tolerated but it could be the pmr causing some of those symptoms, certainly i had skin problems (boils, rashes, dry skin) and weak painful legs. I was getting very down prior to diagnosis as you do when you feel ill eith no explanation. Perhaps they have never Found a dose that controls the inflammation for a suitable length if time, so she has had no benefit from tbe pred, but a lot of problems. I am concerned that gca may also arriving like a train, your mum needs investigation. There are a few people on here who have lost sight in one eye due to gca but i am unsure whether that would happen on 10mg pred(?). She should see dr with a short list of key issues and get concerns addressed. Good luck🌻
Thanks , yes that makes sense , she has said that the Pred doesn't work or at least relieve the painfull legs etc as you mentioned. she got the boils on legs as well .
If the co-codamol isnt working i would be asking for a higher dose of pred for a month or more, or asking the dr to refer me to rheumy for further investigation.
Just put in my two cents worth, but I take a product called "Autoimmune" which is in capsule form and contains organic turmeric and bioPerine a form of black pepper. Have been taking them for a month now and find life much easier and blood levels normal. You can buy them on line and it is worth a look at their web-site. They do what they claim. Hope this helps. x
Do you know what sort of doses and reductions she has been given? Often half the trouble is a doctor being far too enthusiastic with their approach to reduction - very slowly is the way to go with as small steps as possible which isn't slow in the end because the patient can cope with it and doesn't end up yoyoing which always leads to trouble.
And often not all the problems are really PMR - myofascial pain syndrome has a lot to answer for.
I believe that she has been told to reduce dose too quickly. Given the problems she has with Pred mum is only too willing to follow that advice. Having read other peoples way of reducing by even .5 to 1 mg steps I'm sure the doctors advice has been wrong. More like 5mg steps , but she's so desperate to come off them ... I cant seem to convince her otherwise. Very difficult, it takes so long to get an appointment as well at least 2 weeks so hard to micro manage the situation.
5mg at a time is far too fast for a PMR patient, you overshoot what you need and have to go up again and then it is harder to get things under control. Plus that sort of sized drop also causes steroid withdrawal symptoms which are almost the same as the PMR you are taking it for.
have a read - maybe she will manage it too? The only way is in much smaller steps, not more than 2.5mg 20-15mg and preferably 1mg at a time. 1mg every 2 weeks is possible - and far more likely to work. But I do appreciate the difficulty you have with a lady of her age who no doubt thinks all doctors are infallible?
Is your mother under the care of a Cardiologist for her blood pressure or is she just struggling along with the GP?
Blood pressure can cause BP related migraines and joint pain , and extreme redness to the eyes and the swellings you describe too.
If her BP medication is not appropriate and at a high enough dose to counteract the effects of the Pred she needs she could be stuck in a very painful vicious circle.
If she is struggling with side effects from Pred she should see a Rheumatologist ASAP to see if she would be better suited to steroid sparers instead.
And of course , there is the chance of GCA from the symptoms you describe , again something that needs to be checked by a Rheumatologist.
There are other options out there for your Mother but it will need a consultation with a Specialist who is knowledgeable in GCA/ PMR and the older patient with blood pressure issues. And who is willing to take time to listen sensitively to your Mother and her concerns.
Unfortunately , to get this specific care , everyone is right , you will probably be better getting a Private consultation.
Definitely , write a new post requesting advice for a good private Rheumy in your area. This is useful because if they work within the NHS too they are often likely to take a patient into their NHS list ( if they don't suggest it you can ask if it is possible) . They usually send a letter to your GP to inform them of any advice they give you and request them to refer you.
This referral is then usually fast tracked into the system by the Rheumys office. It's sad that this is necessary , but with a very over stretched system it's the best route to reducing your Mother's symptoms and side effects .
Let us know how you both get on , and well done for being such a caring advocate on your Mother's behalf , and if you ever need to let off steam ( as we know it's hard for our carers as well as us ) or have any other questions we are always here to help if we can.
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