Aching legs again

[Caulkhead63]

early in week I was dropped down from 15 to 12.5. my aching legs had stopped but have now started again. Will my aches stop in a while?

[DorsetLady PMRGCAuk volunteer]

It may be just steroid withdrawal - that sometimes does appear as original symptoms, but should go by days 5 or 6... if longer than that the would say you dropped down was too much.. Although 15mg - 12.5mg is in most guidelines it sometimes too much for people.

If the latter is the case you ned to return to 15mg, get rid of the pains and then restart your taper...with a smaller reduction this time.. preferable 1mg. Ask your doctor for 1mg tablets, but if you have plain uncoated tablets - you can cut the 2.5mg into half to give you approx 1.25mg which should be fine for the moment.

[PMRpro Ambassador]

It also depends on what you have been doing - did you do more before the aches returned?

[Caulkhead63 in reply to PMRpro]

no not been doing anything more than before so hopefully it will stop after a while

[Pink_and_Black]

Hello Caulkhead. Aside from the upper body pain, weakness and stiffness in the mornings, aching heavy legs have been a major symptom for me throughout this illness so I feel for you. I had complete relief at 20 mg when I was diagnosed 14 months ago, but as soon as I started tapering the leg problem came back . Now at 4mg, all symptoms are back in full force. Any over exertion - long walk, gardening, a day caring for my grandson or cleaning - and I pay for it badly the next day, and sometimes for a couple of days. Only rest resolves it, which is frustrating I know, but we have to accept that for the duration of our encounter with PMR we can’t do things as we used to, and have to learn to pace ourselves. I keep trying various recommended supplements, but I can’t say any have made a significant difference. I’ve just purchased an Arc machine which was featured in a newspaper article. Such was the demand after the article that the company were overwhelmed, ran out of parts and can’t deliver until November at the earliest. It’s a microcurrent therapy which “stimulates Adenosine Triphosphate - the molecule used by all living cells to provide a constant supply of energy that enables them to carry out all necessary cellular functions”. I’ve struggled with the side effects of Prednisolone, so decided to taper more quickly than is recommended and am pinning hopes on this appliance helping me - I’ll keep you posted! In the meantime, I send you a big hug and all good wishes that you find a way to manage your symptoms. Xx

PS - Just thought, in case anyone is interested, you can read about Arc technology here: arc4health.com

[Caulkhead63 in reply to Pink_and_Black]

Thank you 😊

[PMRpro Ambassador in reply to Pink_and_Black]

"Now at 4mg, all symptoms are back in full force" ... "I’ve struggled with the side effects of Prednisolone, so decided to taper more quickly than is recommended "

You have almost certainly overshot the dose you need - the speed at which you taper is less important than the level to which you reduce. The underlying illness has not gone away - you were started on a dose that was more than enough to deal with the inflammation it creates and then you have titrated the dose to find the lowest effective dose for you. The pred has had no effect on the actual disease process and it continues in the background and creating inflammation and symptoms until it burns out, If you take too low a dose of pred then the inflammation will simply build up, like a dripping tap fills a bucket and overflows sooner or later - and you will be back where you started.

I would like to think your investment will pay off but I doubt it somehow because it probably doesn't address the real cause of the symptoms, the inflammation. It is also not a case of pred bad, no pred good. Untreated PMR is thought by experts to be more likely to progress to GCA - and if that were to happen you have a stark choice: take pred at a high dose (up to 60 or even 80mg) or risk total and irreversible loss of sight,

Which side effects of pred posed you problems? Most can be mitigated or even avoided when you know how so if you ask, someone is likely to have found some way of improving things.

[Pink_and_Black in reply to PMRpro]

Hi P, I choked up reading your reply because I know I should be tapering more sensibly, but I have developed steroid induced cataracts in both eyes and high blood pressure, am losing handfuls of hair daily, have dry eye syndrome and have spent almost 9 months trying to find a prescription that corrects my vision since it went blurry last year. I’ve been checked out for GCA and am called back regularly to the Opthamology department at the hospital for monitoring. I was bruising badly with even the slightest knock and despite eating very healthily I have put a stone in weight on, which affects my back and knees (I had a total knee replacement in 2020)

It’s hard, especially as I care for my elderly mother who lives with us, but my husband is a tremendous support and takes over as much as he can when I have overdone things and need to rest. I understand that I may well have to go back to the beginning again, but at this point in time am determined to try and find an alternative as I am so depressed about the effect Pred has had on my eyes; I feel disorientated a lot of the time because of my blurry vision, and it is impacting my work - I design greeting cards and spend a lot of time working on the computer.

Thanks for your reply. Although I don’t comment much, feeling I don’t know enough to advise, I really appreciate this forum and have learned so much from your input. Xx

[PMRpro Ambassador in reply to Pink_and_Black]

I do get all that - especially the carer role as I was sole carer for my husband all through Covid until his death last autumn.

The cataracts won't go backwards, they are there. Healthy eating isn't enough for weight management - that almost always includes wholemeal bread and fruit - both still sources of carbs, Cutting carbs can be hard, especially if, like me, it has to be a lot to lose weight. But cutting carbs does have a lot of other plusses with regard to other problems that might surprise you.

My blurry vision was/is due to PMR more than pred, especially the dry eyes aspect, it was there long before I started pred but after PMR symptoms appeared. And of course lots of time on a screen doesn't help. Is it constant? Mine worsens with fatigue or simply during the day and when I forget to blink frequently! It has recently been worse - and I suspect it was due to a longterm mild bacterial infection since a week of antibacterial drops made a massive difference.

I think almost everyone hopes for miracle measures in PMR. Most are disappointed though, You can HELP the impact of pred, you rarely can replace it.

[Pink_and_Black in reply to PMRpro]

I have been following a Keto diet for the last few months and have lost half a stone. I was already a stone overweight before my diagnosis because of a long period of decreased activity and exercise with the PMR and knee problem; I’d had symptoms for well over a year before diagnosis and any exercise or increased activity was wiping me out. Then after cancer treatment, the symptoms escalated and it was eventually diagnosed. Cutting carbs has definitely had some effect so I’m going to continue with that, but it hasn’t stopped the cataracts progressing (getting bigger) or my hair falling out. Yes, the blurriness is constant but my optician prescribed some eye drops which has helped with the dryness.

I know Pred is the only thing that will suppress the inflammation and take away my symptoms, but with my eyes and high blood pressure (am now having to take Amlodipine 10mg) I’m concerned more about how it’s affecting my body in other negative ways. As I feel currently, it’s probably only a matter of time before I have to accept I can’t do without the Pred, but I just want to test this Arc machine first and try some other supplements, before I start again.

Another reason I’m trying to come off it, is that I need some corrective surgery for adhesions that occurred after my axillary node clearance and radiation, and I’m worried about healing - or that he won’t operate while I’m on steroids. At the moment any small cut or abrasion takes weeks to heal. I’m due to see the surgeon in January and would like to be down to at least 2mg by then.

I hope your eye infection gets better soon. Big hug, Rosy xx

[discoballs]

Mmmm! I have been tapering and getting achy legs too.

David

[Caulkhead63 in reply to discoballs]

glad it's not just me! I'm new to this and it's all a learning curve. I've learned more on here then my doctor told me! He gave me some print out that told me next to nothing! I was shocked when I read how long some of you have had it! And about flare ups! He certainly didn't mention them!

[PMRpro Ambassador in reply to Caulkhead63]

Most flares are due to reducing the dose too fast - or in too big steps! Many doctors think using pred is the same whatever it is being used for, It isn't!

[discoballs]

You will learn a lot here Caulkhead63

[Missus835]

That's a big drop. I'm at 12. 5 down from 13. Was at 11 and had to go up a bit. I'll find the balance, but back of arms are very touchy as well as tops of thighs. Sahking my head,

[Colleen1974]

I'm new to PMR with symptoms two months ago that found me with horrible morning stiffness after a shoulder injury and the 2nd Pfizer booster. Just started 15mg pred 8 days ago. I have the achy legs too which I don't see many people talk about. They are aching right now but I can walk. I had days when I couldn't walk without two canes. I think the 15 mg dose was too low but I didn't want to go higher because I didn't want to have to go longer to get off of it. Wanted to say don't be afraid of cataract surgery. I had mine in both eyes at 55, which is considered young, because of 30 years in front of computer monitors. I was very near sighted and it was a miracle to have 20/10 vision. It has changed a bit over the years but it's still good.

 I'm learning so much from all of you here and seeing a PCP for this right now. Not certain when/if to switch to a rheumatologist. In some ways my PCP my be more flexible to let me titer down the way I want but I'll make that decision down the road.

[PMRpro Ambassador in reply to Colleen1974]

"I have the achy legs too which I don't see many people talk about"

You've probably missed those posts/replies - it is talked about a lot.

When/how long it takes to get off pred doesn't really relate to the starting dose being higher. Sometimes a higher starting dose clears the inflammation out better and you are able to reduce more easily and quickly without as many flares as well as not needing s long to get to a stage where you can start reducing.

[Pink_and_Black in reply to Colleen1974]

Thanks for the reassurance about the cataract surgery Colleen. Although they are only considered moderate at the moment so I haven’t been referred yet for surgery, I’m wondering whether to consult a private Opthamologist to see if I would benefit from surgery sooner, as they don’t seem to be able to correct my vision with a spectacles or contact lens prescription and I’m getting daily headaches.

The achy legs are horrid aren’t they. For me it’s the muscles at the front of my thighs, but I have also developed Achilles tendonitis in my right leg. PMR, the gift that keeps on giving 😂

[Miacaro45]

My leg and hips hurt me so much yesterday that I could hardly walk. My daughter bought me CBD tincture( no THC) and the pain really subsided. Just a thought…. Feel better