so what is better???

[Wallysma]

I have lesrned so much.in the few days I have been here. I was diagnosed in May after weeks of severe pain and confusion..."what the hell is this? " because I live with several pain conditions it was confusing. The worst for me was my hands...swollen and so painful I could barely use them. I did have new pain but.....so when I saw my rheum I learned about PMR. Went.home with 20 mgs of pred and after about 3 days I felt great. I stayed on it as.instructed then a few weeks later followed the schedule of 20 to 15 wo weeks to 10mg. I.was not sure what should happen. Once the:"volume" was turned down on my hands I then realized how bad my back,hips, shoulders, R arm were. I also a till referenced the major swelling of my ankles and eventually feet. The fatigue and fogginess were off the charts. I was frustrated and confused. I was not sure what "better" was/is. It became clear to me the focus for my rheum and PA was reduction of meds. I contacted them and the told me to go from 10 to 12. When I saw my pain doc we discussed and he said he would start over which I did. I wanted to do that but....fast forward to the last few weeks I am on 17 but that after some reduction and going back up. But when all of you reduce how are you feeling? All pain gone? You feel great or....this is the thing that I need to know. I never had back issues before it (is in the hips and.upper legs as well). So if I go by that I might not go down....anyway this may seem like a stupid question but for 30 years I have managed these other conditions pretty well. I need to get a grip on this one. Oh...my labs were high obviously at the beginning...went down some and then back up so.....

thanks for reading. Sorry so long. Please let.me know what you think. Please take care and be well. You

[cycli]

Wallysma, welcome. Love the name. Rather descriptive for your child though Sounds like you've dealt with a bundle of conditions in life and their medications. If you read more you will see from previous advice it looks like your reduction was too much too soon. You need to be stable and constant in a state to reduce . The tapering advice here is 10% max at any one point and then maybe less at the lower doses. How long between drops depends entirely on bloods and symptoms. Never until you feel ok. first. Only you know that and it isn't on a neat timetable. Others will advise. Your medics have yoyo'd you and that's not good, believe me. Keep active but don't overdo it. Good luck.

[Wallysma in reply to cycli]

Thanks for your reply. Wally is a JRT....lol I understand what you ate saying. But one thing when you know it's ok to reduce do feel like PMR is gone or just a reduction in symptoms? Does that make sense? I agree.

I just followed the drug reduction plan. Knowing.NOW bad idea! So I want to get.this right. I feel a bit better but key pain points are still cranky. So is that time toove down or wait for the pain to go.or.

.....I am curious how people are explaining this part. That would help me so much. Ok thank you. Take care. Healing on this one is not for sissies that's for sure.

👍😀

[DorsetLady PMRGCAuk volunteer in reply to Wallysma]

Following a reduction you may get a return of symptoms for a couple of days -that’s steroid withdrawal-then they disappear. If you get them a week or so later and they stay, then you have gone too low -see this for fuller explanation -healthunlocked.com/pmrgcauk...

..and if you have symptoms on current dose, do not reduce…they will only get worse.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Maybe have a look through this intro post for starters -so you have more idea of what to expect -

healthunlocked.com/pmrgcauk...

Please also read the links included -covers some of what you are questioning -

..and you probably need to consider your tapering regime -what you’ve been given previously was a tad suicidal to put it politely.

[Wallysma in reply to DorsetLady]

Tad suicidal...yup that about covers it. LOL

[PMRpro Ambassador]

Hi and welcome.

"my labs were high obviously at the beginning...went down some and then back up"

That suggests you started on enough pred but in reducing went below the dose you needed at the time. It can't be hurried - and that is the main mistake doctors make in their fear of pred, forgetting the inflammation is also causing damage. The ideal is to start on whatever dose and then monitor symptoms and markers until they are reduced and steady - and then you can try a small reduction, 2.5mg at the start is plenty. Then rinse and repeat as long as things stay stable.

You shouldn't feel worse at the end of a taper step than you did at the start - but you too have to do your bit and adjust your lifestyle and activity to go with the disorder - do too much and you will feel as if you are flaring.

20/15/10 in PMR is just lunacy ...

[carolpatriarco01]

I see my rheumatologist every 3 months and at that appt. I get my bloodwork results from the week before and between those results and how I’m feeling we decide to go down on pred or stay the same and even sometimes go up. I’m at 3 mg.s now after 5 years… with PMR. I’m never without pain. Just variations of pain. I hope this helps you😊

[Wallysma in reply to carolpatriarco01]

Wow....so it really hangs on. I struggle some because of all the pain I live with before PMR so I kind of focus on where the new pain is I also find that since my functioning isn't great I might feel a bit better but if I try to do something small I feel so drained and tired and have to stop. But.I am trying hard to learn what my body.is telling me. And wrap my brain around the ifea that this could take years. Good luck with your healing and I am grateful for the info. Be well!

[cycli in reply to Wallysma]

try not to focus on pain but generalise it as normal and I find it blends into a general feeling of having to cope with "things" rather than taking over. Sort of mind over matter.

[Tiredofpmr555]

I think it's good to remember what hurt when you first came down with PMR and the prednisone took the care of the problems and not confuse other conditions with the PMR. While tapering towards withdrawing from medication all kinds of other pains could crop up and probably don't have anything to do with the original condition so raising the steroid dose won't help unless inflammation is the cause. I had various aches and pains, mostly sacroiliac and hips and steroids can't cure those. I am now off of medication and still have the lower back problems. I am just trying to point out that not everything is cured by raising doses and being on steroids has it's own disadvantages. I feel so much better generally speaking now after just two weeks of not being medicated.

[Wallysma in reply to Tiredofpmr555]

Hi thanks for the reply. No I understand....it's just been a struggle to separate what's what. I believe previous problems are now flaring or.have gotten worse from the inflammation

My biggest issue with PMR were my hands

Unbelievable pain like knives with no relief. Hsnds and ankles very swollen. I had hip, back, thigh pain. My neck felt weak kind of. I was spaced and exhausted. Because my hands were so bad and obviously that presented minute by minute challenges I was miopic it was my focus. I felt really "sick"...

When I started on the 20 mg of pred the 1st time I had a few days where nothing hurt...wow...lol. But after the first week my hands were still good and the swelling had gone down.

Now I'm really left to struggle with back, hip pain. The swelling. Sometimes my legs, neck. I am exhausted and just over all this. I just feel great. Being on a 16 mg dose now has helped some for sure. Now I am trying to figure out what feeling better enough to reduce the dose is....so for me the back pain is new and bad. I had a different type of hip pain before.

Is the back pain my guide or all of it...my energy? It is confusing. Especially since.I have jumped around on doses. Now at least I understand what should be done and when dosing needs to change...when symptoms improve and it's steady for a bit. But I need to figure out what improvement literally means. I.hope that makes sense. You all have been great!. I have learned a lot.

@

[PMRpro Ambassador in reply to Wallysma]

Low back pain for me is associated with myofascial pain syndrome - and it is often a feature of PMR. One really good PMR rheumy in Australia regards it as the definitely pathology of PMR

[PMRpro Ambassador in reply to Tiredofpmr555]

"mostly sacroiliac and hips and steroids can't cure those"

It depends what is causing them - but often they CAN when used optimally. They certainly have made a lot of difference for me - but not by increasing oral pred dose, local treatment is crucial.