Hi
I have had PMR 13 months, does all the pain ever go away? I have not had one day without pain yet, I am just 50 but feel a lot older most of the time.
I have had really bad shoulder pain or hips pain on and off for 5 years but had really good bouts in between. Now there is no break 😢
I am getting involuntary eye shaking and glass splitter feelings on the top of my hands and toes.
I take 9mg of steroids which helps.
I swim and have a hot tub that helps.
Xxxxx
Hi carolBF and welcome, if this is your first post. I am concerned that you have never had a day without pain and was wondering if your start dose was high enough? It also sounds as if you have more going on than just PMR. Osteoarthritis gives me a glass splintering type pain in my fingers at times, good description. I think you need to return to your doctor for further tests and pain management advice.
A too fast taper of Pred will also allow pain to break through. We recommend slow tapering of small doses, never more than 10% of your dose spread over a week or two. If your PMR pain is increasing, ask your doctor if you can increase your Pred to see if it helps. Do a search for tapering programmes on here. Good luck,
Hi
I have been a member for a while and really like the professional/ members advice,
I also had this feeling in my knee but it has completely gone at the moment,
I started on20mg and was advised to reduce 2.5mg a month, I think this may of been to quick.
I have had one appointment with a specialist but he was not interested in seeing me again, telling me to swim and use a hydro pool which I have all ways done both for around 11 years.
I recently had both of my shoulders scanned finding a rip in my left shoulder however he said this doesn’t account for the lack of movement range. This doctor said his own dad has PMR whom is 74 and he wasn’t convinced at 50 I have it. He thinks the professionals may be missing something else and referred me back, I do worry about MS as this is in my family.
Sitting down for longer then 20 minutes is agony lying down is not much better, however if I support my hips with a boaster cushion it helps,
I would love a little break from pain. If I up my steroids I get muscle ruptures in my calfs just from using steps.
I will carry on being positive as I think this is what he got me through and he last 5 years
Xxxx
Well tell that Dr the 2019 review of guidelines reduced the age to 40years onwards due to advice/fighting of patients.
I will thank you x
I really do think you would benefit from a second opinion and a thorough examination for other causes for the Pain as well as PMR.
Some of us are never 100% pain free , we see 80% as a good day , but we are usually the forum members who have other chronic conditions , joint injuries or other illnesses going on , PMR or GCA us only part of our Pain Story.
If you have PMR and nothing else , no matter how severe , you should be getting more than 50/60% pain relief a day if you are on the right dose of Pred and take something like Paracetamol for any possible mild Nerve Pain .
Things like good diet , supplements and the swimming and hydro are good Self Care , but they will only give short term relief and can't solve the Pain alone .
You won't get more relief until you really know what your whole diagnosis is or if you have other joint issues that are not being treated.
Request politely but firmly to see another Specialist and also get a referral to the Pain Management Clinic as they will often get to the route of the problem by sending you for tests at the right Departments and try combinations if drugs and therapy that the GP or usual Consultants don't always consider.
Hi Sheffield Jane
Can you tell me how to search on here please? I can’t find a search button
Cheers
There is a Search HealthUnlocked button at the top right of a computer screen - not sure about other devices.
But frankly - it is useless. Even if you type the exact title of a post it bring up a load of other stuff. It works slightly better if you restrict the search criteria. I find I find things better using google!
If you want to look at past posts you can bring the list up from the Home page of this PMRGCA forum - but be warned, there are a LOT!
To the right of your screen you will see a list of topics that you might want to click on and read further like tapering.
Hi Carolbf, well that's not good. Did the pred give you relief at higher doses and what dose were you on? The relief you at looking at if around 70% if you got that sort if relief initially then you need to talk to your gp about the fact you have "relapsed" in the guidelines terms, flared in our terms. I also have OA in various places that was helped a little at higher dose (15) but manage it with otc pain klers and prescription ones I take for fibro. I too have never had a day without pain so recognise the impact this can make to your life. Hopefully the dr will recognise your need, but if you can't get an appt speak. On the pho e about hitting it with an extra 5mg for a week. I am concerned you have always been in pain so if you get no relief from a week of 5mg perhaps a referral to rheumy if you haven't had one. Pred does burn out and should get easier if the dose is the right dose. Sadly the median time on pred is 5.9years. But some people get well by 18mths to 2 years supposedly. You seemingly had untreated pmr for a long while, get the correct dose that works and find out what else might be going on. 🌻
BTW.. I can't swim with my usual crawl as my arms hurt so much if I get them over my head. Perhaps do a bit of arms at side, on your back flipper swimming. Hard to describe. 🤣🤣🤣
Thank you
I take 9mg at the mo,
If I take a extra 5mg for a week and its not any better do I have to take 5 months coming down 1 mg a month?
I swim doing a very small Breast stroke walk a length swim a length. To be fair I am happy with 80% pain relief in water until I get out 😀
Yes my legs went from under me early on when I spent too long in a spa pool just lazing. I was finally going to go back swimming this week but when I checked the qhiet/disabled session where they have the water slightly warmer, the boilers were being replaced. They said the water was 17 degrees so it would rltake a while to warm up. 😳🥶
No, you can usually go straight down again. I was on 6mg for a year and flared. Did 3 or 5 days at 5mg more, then dropped to 7mg as I needed an extra 1mg. I do have rheumy go ahead for self managing unless it's a dramatic turn for the worse.
Thank you sounds helpful x
Have they actually done any Neurological or Connective Tissue tests for you yet or checked you for Fibromyalgia or MS with your family history ?
No I will go back to the doctor when I get back from my holiday. X
I would say that if you have never been anywhere near pain-free there is something else going on as well as PMR so in that I agree with that doctor - however he's wrong about the age factor, you can have PMR at 50, and younger. I think you do need to try a higher dose to see if it helps - but if you are at a dose that has allowed the inflammation to build up then it may take more than adding 5mg for a week to get things to a decent state.
What makes them think going to the pool/hydrotherapy will help reduce symptoms if the inflammation isn't under control?
BTW - there are no professionals on the forum, we are all patients with PMR/GCA or who have had one or other in the past. Some of us have worked in the healthcare sector for years as well as having extensive experience of both GCA and PMR - pros in that sense!
I’m 65 yo and my 1st year anniversary date will be June 19, 2020 and as far as I currently know I only have PMR...at least the symptoms I had were of only this and the blood tests seem to confirm it.
I became “pain free” (from a completely acute debilitating pain in the hamstrings that got me into the ER) within 1 hr after given a dose of Prednisone. Seriously, the sudden relief was like I was cured!
That said they went way overkill on my dose with 80mg (don’t know why, I didn’t have any symptoms of GCA). I’m at 14mg/d now with a half dose (7mg) taken in the morning and the other half (7mg) taken at night (i.e., 10AM/PM). The way my dose was reduced was not a DSNS approach.
I was released from the hospital the next day after given another 80mg dose with months supply of 20mg Pred tablets and instructions to take 60mg/d each morning (should have been evening if not splitting the dose). Was on 60 mg/d for a month before decreasing 10 mg/d every 2 weeks until reached 30mg/d then a 5mg/d decrease, upon reaching 20mg/d then a 2.5mg/d decrease every 3 weeks, until reaching 10mg/d, then was to go 4 weeks and decrease by 1mg/d.
I got to 10mg/d for 16 days when symptoms returned and over a course of three days I increased my dose back to 16mg/d. At that dose I was pain free again.
At the same time, at the advice of my Rheumy (I let him know what I experienced and done on the portal), I also started splitting the dose.
During that reduction from 80mg/d to 10mg/d scheme, for 24-48 hrs after the decrease I felt a little off. No pain exactly kind of a “wozzy” feeling after which I was ok. After my relapse I started searching the internet for more info and stumbled upon PMRPCAUK and it has been a Godsend.
I’m following DorsetLady’s Simple 5week taper after being at 16mg/d for 2 weeks. I can say I experience no wozziness nor pain. I also reduced my taper step from 2.5mg to 2mg decrease and that may be too much with me starting a “new dose” taper schedule for 12mg/d this Sunday. If so, I’ll take an additional 0.5mg and change the new dose to 12.5 mg/d and if still having pain bump it to 13mg/d.
The main thing I learned is don’t rush it, this isn’t a horse race (although some Drs and Rheumy’s act like it is). We want to attempt to find what dose we need to function (preferably with no pain) without overshooting it. Ten percent reduction seems to be the general “guideline” but we are all different and may have to make our reduction increment even less than that, especially when we get below 10mg/d.
Once we find that dose, if it isn’t as low as the doctor feels is best for our overall health they may supplement with another drug like methotrexate (MTX) or substitute a different med for Prednizone.
Also speak with your doctor regarding what vitamins and/or supplements you should be taking, what form is best (e.g., Vitamin K2 instead of K1), when and how to take them (group the fat soluble from the water soluble and take the former with milk or similar and the later with water), and of course dose to reduce rate of degradation of the bone and joints. If you check my post (one from last night) you’ll see what taking and could put that to your doctor for feedback, I’ve already done the homework so I’d suspect he may sign off on those with an adjustment on dosage. He may also drop the vitamin C and E as some believe it enhances the immune response making inflammation worse while others believe it just bolsters the immune system and doesn’t increase immune response sensitivity. I’m of the later believe so I’m taking it.
Of course if you have other alimenta like GCA, RA, etc. that complicates the issue and I don’t know how that impacts it all.
However you will find a wealth of information here and everyone is helpful.
I wish you the best.
That really is a strange way to approach a PMR diagnosis! Just think - with a more usual starting dose you could stay on a low dose of pred for years without another drug and still have a lower total dose of pred!
Yes. It was a Hospitalist that prescribed the 80mg...and I’m not too trusting of them. Had a real bad experience with my father where after a stroke they put him on 12 different meds. One I found was at the wrong dose (10x, they gave him the dose for treating Epilepsy) and the mixture led to drug induced Párkinson’s disease whose complications indirectly led to his death. I kept telling the Hospitalist (Dad’s) to speak with his Cardiologist (who had become his GP) because he was previously taken off some those Meds for a reason. They ignored me, so I convinced mom to call the Cardiologist and express our concern. He stopped by for a “visit” and decided to have a talk with the Hospitalist. 5 Meds removed, but not before the damage was done.
I’m not too trusting and with a Biochemistry degree and past experience working in an Immunology research lab at a Cancer Research facility for 8 years I don’t take what doctors tell me as gospel or fact. We never trusted published research.
When we identified research that looked like a good foundation to build from, we started by repeating their research tests at least 5 times to ensure we got the same findings. Most of the time we did...not always. Bottomline it’s my body and it’s going to be a partnership in the treatment of it or I’ll find another doctor.
That's an awful story and unfortunately it happens far too often.
That's why it's often important for older or more fragile people to have someone their to advocate for them when they have more than one condition , especially in an Emergency situation because they can be ignored or undermined.
My Mother has not been getting far with her treatments recently , when she finally sat down with me and went through her medications list I found four medications that either contraindicated or she had taken before and been intolerant to , no wonder she was having more Cardio incidents and falls.
It is really important for us all to keep track of what our doctors advise , unfortunately, you can't just go on trust.
Tell me about it!
Terrible story re your dad. You must have been flying at 80mg.
I take research with a pinch of salt. I like to know who, why etc... Funding, methodology how data analysed etc. You certainly have the background to manage pred and understand the whole process. I have been lucky as the rheumy has been open to me managing pred. Some people end up s rabnling and worrying about dosage and Dr reactions to flares. Having trust in a dr is vital.
Thinking about it, I have probably always had some pain which does go up and down. Sometimes it can be quite minor.
Hi Carol, as a newbie, just about 1 1/2 months on prednisone for PMR, I am pain free most of the day. I generally have mild shoulder and arm pain during the night and morning before I take my prednisone. I hope you can get to the cause of your pain.
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