Hello I am a new member and don't know very much about PMR,I was diagnosed with this did six weeks ago.Suffered with Fibromyalgia for several years in constant pain .New doctor,blood tests I have a illness I never heard of before any information would be helpful.
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Hello and welcome Ladrador. You have landed on your feet, finding this site. There are very experienced people on here who will be able to answer your questions as they arise. A number of members have Fibromyalgia as well. It’s a friendly, informative,community, it’s been a Godsend to me for the last 30 odd months. I was diagnosed with PMR in March 2016. What is your most pressing concern?
I am on prednisolone started at 15mg and after four weeks have reduced to 12.5mg .Ican't believe how well I feel not felt like this for years ,also take Alendronic acid dissolving tablet that makes me have a sore and husky throat for couple of days after I have taken it just wondered if it is normal or if anyone else feels the same.thank you for speaking to me.
I would want to have a bone density scan that indicated that I had osteoporosis before I would take Alendronic Acid. The side effects are so off putting. Please press for a DEXA scan.
Glad you got the Pred miracle, you may have had PMR for ages and thought it was your Fibromyalgia.
I do believe you could be right ,I have had Fibromyalgia for at least 25 years but never as bad as this last year,was practically bed ridden I also have arthritis in my spine and neck so saw a doctor three times and was told to up my painkillers , finally I got the doctor who looked after my husband before he died, who I knew was good ,instantly I was having blood tests and diagnosed so quickly .What a relieve to know there was something that could be done to ease my pain I now only see this doctor many thanks for your advice
I could hardly move before diagnosis then with pred I was back in the land of the living within twenty four hours, it was like magic.
Why are you taking Alendronic Acid do you have osteoporosis? If you don't know you should have a Dexascan to check your bone density. Personally I would not take a bisphosphonate like AA unless I knew I needed it.
You should also be prescribed vitamin D and calcium to counteract any side effects of the steroids.
Hello. This forum saved my sanity and a few misguided medical decisions. As the others have said do request a DEXA scan to see if you really need AA. It is ‘sold’ as quite a benign drug and that your bones will become like soft noodles if you don’t take it. As with many drugs the situation requires informed risk analysis. I refused and demanded a DEXA first which showed mild osteopaenia at a level that could be treated with diet and supplements (according to the WHO assessment tool). You must must must take a good bone diet, much of which is written about on here, whether you take AA or not, another thing they don’t tell you. Also make sure your Vit D level is checked as it is a key to getting the nutrients into the bones.
So, your throat. That huskiness may well be acid reflux and if left unchecked could lead to inflammation of the oesophagus, a situation that must not be allowed to continue. You need to report this and make sure you are taking it exactly as the instructions say. If you decide to continue with bisphosphonate medication there are other types that may be better for you but understandably they try cheap first. There is also a lot written here about control of stomach acid whether diet (didn’t work for me), proton pump inhibitors, antihistamine types or others. The mantra of the day is read, read and then read some more.
Welcome! I have both pmr and Fibro and get so much help from this site that it makes things more bearable. I've learnt so much about managing both illnesses my gp is keen to hear what advice or information I have got from this forum as he is learning too. I'm in NZ but if you're lucky enough to be in the UK you may find a support group near you. Best of luck with your ride on the Good Ship PMR with the fibro tug in tow 🤣
Gorgeous post from gorgeous Angie xxxxx
PMR is much the same in effect as fibro - but with the rather better point that it can be managed pretty well even if it is pred you need. At least the pain is gone!
Ask some specific questions - some of us could write about PMR all day just in general - and have a good read of some other threads that are asking questions in the opening post. The NE of England Support Groups have a good website with lots of info and there is a range of links here:
patient.info/forums/discuss...
to reliable and good PMRGCA information.
I got diagnosed about 6/7 weeks ago and had already found this site before my blood results came back and it’s been amazing how much help I have had. I was prescribed AA and after discussing this on the forum and reading about the side effects decided not to take it. This is up to you but read about it before you make a long term decision. I haven’t even begun to taper and my gp isn’t looking to start this until January so was wondering why you have already started to taper. Have all your symptoms gone? Maybe one of the more experienced guys on the forum (all those above) think but it seems very early to me. You will find the forum very helpful and reassuring when everything is scary and confusing. Welcome to the club.
It's a fairly standard approach - it works for some, not for others!
Ok glad mine has decided to take a slow approach
Quite 
We just tried to lower the dose after four weeks,but if I was back in pain we would go back to the higher dose for longer but I am okay on the lower dose.Now the dose will be lowered very slowly over a long period of
time
That’s ok then. If in doubt about reducing make sure you come on line and Dorsetlady or pmrpro will tell you about ways to do it. I know there are on the forum who can advise you but can only think of the above. Debby
You’ve got a good doctor and us! You are going to be fine.
Thankyou
Same here......I am 6 weeks or so in to PMR, refusing the AA until I see results of bone scan which I am having at the end of the month. I did try a low reduction of 1.5 2 or 3 weeks ago, but with work getting in the way had to go back to starting dose of 15mg as I was struggling. Am seeing my new dr tomorrow, so it will be interesting to see if he suggests another stab at reducing. I am of the opinion I will only reduce by 0.5 using the go slow method, if I do decide to taper again at this point, as I am scared of feeling crap again. I am tempted just to sit where I am, but then I would probably never want to budge, and I know I will have to move eventually. But when you know you have to still carry on with everyday life, which for me includes working (albeit only 3 days) and looking after my granddaughter every Friday, it is scary. It gets to me sometimes, like at the weekend last weekend it was my birthday and I was in tears as I felt so fatigued having done too much in the week. But I just want me back, and its not happening. And I know I will be like this for a few years. Sorry for being depressing. Its just been a difficult day.
Are you ok? You are not being depressing and everyone has the really rubbish days, some more painful/longer than others. Don’t brood on things. Debbyx
Thank you, I'll try not to. I've always been a glass half full type of person, but am realising just how strong we have to be......and I haven't experienced a full blown flare yet. Your kind words mean a lot.
You may never experience a full blown flare!! Just take things really slowly and make sure that if you are worried come back to the forum for the experts advice. The guys that have been going through this for years are more than willing to help if you ask them. You need to accept you wont get the “you” that you want back for a while. Things change so you need to adjust for the time being.Debbyx
Thank you. X
Sorry that you are having a difficult time of it Lonsdalelass. You do a heck of a lot. If you feel like just sitting with your dose, just sit. It’s about listening to your body. Something shifts and you’ll know it’s time to taper. Do cat nap when you can, it can be very restoring. I’ve grown to love my little power naps.
Thank you SheffieldJane, yes on my days off I try to go to bed for an hour or so to recharge, and it does help, even if I don't actually nod off but simply rest. It's the sort of thing my mother does, and she's 82! I will have a chat with the dr today and let him know I have been struggling a bit, I don't want him to increase though, my top dose has always been 15 which has made a huge difference, I think I just need to pace myself a bit more.....hubby is telling me that, he knows what I'm like, I've never been one to laze around, always on the go......how things have to change!
I can really relate to your problems as I was happily tapering until I overshot the mark and have had to go right back up again ( thanks to Pmrpro for advice). I also have realised my body was probably trying to let me know it wasn't getting enough pred for a while as I felt grotty, weepy and overwhelmed. Now I've bitten the bullet and gone back up, the world is a completely different place. No pain, no feeling overwhelmed, back on top of everything!! I'd love to think I'll learn from this episode but I have a healthy sense of realism and know I'll probably get to the crunch time again and will have forgotten it's ok to up the dose that my body is telling me it needs. Then I'll be looking for answers again about how to fix feeling lousy. This Good Ship PMR boat ride seems to have life saving ropes attached to passengers so when we fall off, somebody will come along and pull us up. Hooray for the forum and it's wonderful volunteers 🎉🎊🤹⛴️
Ah, thank you so much Angiejnz for your kind words, they mean a lot, and I am so grateful for everyone's support on this forum, it is wonderful. Yes, grotty, weepy and overwhelmed is just how I would describe it. How long have you been on pred now?
Since May and was also diagnosed with fibromyalgia soon after so it's all been a vertical learning curve. Thank heavens for this forum and the people who care. Keep reading as it's not only informative but amusing too. Wait til you get to hear about what Tedski gets up to 🤣
Ok, I'll keep a look out for that! You've really been through it haven't you, not one but two chronic illnesses to contend with......take care, and I hope you have a smoother journey ahead re: your tapering. Keep us posted. X
Welcome to our group. You'll find everyone is very friendly here. I had a reaction to AA when I first started taking it and it got progressively worse over 4 doses and culminated in severe abdominal pain. Needless to say I stopped taking it. I was given another med to take in its place, the name of which escapes me at the moment, but I only took 2 doses and then kept forgetting to take it, so that was that. Since then I have learnt that you can only be on the bisphosphonates for a maximum of 3 years anyway, so I have opted to wait until I actually develop a need through osteopaenia or osteoporosis before taking any more. I already rattle with all the drugs I'm on at the mo. Like you I have fibro as well as PMR. It's no picnic, but this group has been so supportive and very knowledgeable. If you have questions about anything don't hesitate to ask it. I learnt many years ago that the only daft question is the one that isn't asked if you get my meaning. One thing I would advise though; if you develop new symptoms that doesn't seem to fit in with whatever you know, don't be too quick to dismiss it as part of the journey. I developed a pain in my lower spine/hip area that didn't feel the same as the pains I was used to and when I eventually persuaded my doctor that it was neither PMR nor fibro related he eventually had an MRI done and it showed a mass on my lower spine. It took a few months to convince him though.
I am so sorry I hope that you are okay ? I dont want to take AA just followed what doctor said Ineed to find out a lot more about my illness so I can judge what is happening thanks to all of you I am learning more 👍
Recently diagnosed PMR and unsure about preds 
Unsure how to proceed after flare continues
Unsure why doctors put me on theses
unsure how to increase prednisone with flare
New and unsure of PMR journey 🤔
