Back on pred

[HeronNS]

This isn't specifically related to polymyalgia, but....

As some of you know I finally went into remission and took my final pred dose of 1/2 mg at the beginning of February this year, after a journey of about 8.5 years after diagnosis.

In May I showed my doctor a rash on my ankle and we agreed I should use otc hydrocortisone ointment and good skin cream. This worked, but only temporarily. As time went by I got more patches. At first I thought they were bug bites and went so far as to have an exterminator come (complete with sniffer dog, a sweet beagle) to check for bedbugs (needless to say at this time I was totally freaked out). Neither dog nor handler found anything and she was "confident" we had no bedbugs. But as I developed another batch of spots the very next day we had them back a few days later, and once again there was no sign.

By this point I'd realised these spots or rashes were occurring where seams and edges rubbed my skin. Normally never a problem, I believe in comfy clothes! But treating them like a skin condition rather than insect bites was more effective.

This morning when I went for my flu shot I said to my doctor that I thought prednisone had been doing a lot more for me than relieving PMR symptoms. I showed him where the ankle patch was still visible, more than six months later, and a small new one which fortuitously had appeared on my hand overnight! He agreed with me that it probably was a sarcoidosis rash. At first he said I should carry on using the otc hydrocortisone. He thought unless PMR pain was recurring, pred shouIdn't be used because it comes with other problems. I laughed a bit and said, well, I am 77, not 30! I then told him that I also seemed to have (very occasional) IBS, which in the years on pred I'd completely forgotten had also occurred shortly before I started taking pred and have never had since, until a couple of weeks ago.

I also said how I'd been tempted to take some of my leftover pred to see what would happen, but I didn't, not knowing how much I should start with, for example. Obviously from my pred journey I need very little to keep these symptoms completely in check but might need more to start.

So I'm to take 5 mg for a week, then taper by 1 mg a week. He sent a new prescription to the pharmacy, and I've taken a dose of my leftovers already (yes, I had checked expiry date - late next year). Hope this works.

In 2015 would I ever have believed that nine years later I'd be talking my doctor into allowing me to take pred again? No I would not.

[yogabonnie]

I will be curious to hear how it works. Good for you. thanks for this! good luck!!!

[PMRpro Ambassador]

Do hope it works - you had been pretty good at a low dose hadn't you?

[HeronNS in reply to PMRpro]

Yes, the first glimmer of symptoms occurred when trying to taper below 1 mg! I noticed the same thing when off pred in 2020 but as that only lasted a few weeks didn't get worse.

[PMRpro Ambassador in reply to HeronNS]

1or 2mg for life doesn't seem too bad!!!

[Grammy80 in reply to HeronNS]

You may have heard this from me before....but I had a friend in NH....she could not go below 1mg.....after PMR and GCA....she took 1mg a day for 22 years and had great QOL...I wouldn't hesitate to do that. My best💞

[HeronNS in reply to Grammy80]

My feelings exactly, It would be different if I were young but at this age we're all more or less on our way out and just want to be comfortable!

[Grammy80 in reply to HeronNS]

....and you should be!!!!💞

[Bcol]

Fingers crossed it works.

[Missus835]

Hopefully only for the short term, Heron. 🫂

[HeronNS in reply to Missus835]

It's likely to be forever. Sarcoidosis is another incurable auto-immune condition which I was diagnosed with when I was in my 30s (biopsy of lymph node) but had more than likely had since in my late teens. What has been happening are symptoms that had come and gone for years, but never while being treated for PMR! But hopefully will only need that really low dose of 2 or so.

[Missus835 in reply to HeronNS]

Aww. That sucks. At least you have a diagnosis and there's something that will help. Gawd knows what's hiding under the Pred. I fully believe it was masking this fibromyalgia. My heart goes out to you m'dear.

[PMRpro Ambassador in reply to Missus835]

If pred "masks fibro symptoms" - it probably isn't fibro. It isn't inflammatory. Though I believe some think it sometimes has an autoimmune component - which pred might subdue. But if it deals with symptoms - that isn't always a bad thing as there is nothing else that works well.

[Missus835 in reply to PMRpro]

I agree Pro. I think the fibro has been there a lot longer than the diagnosis of it. Nothing really does much for the non-PMR pain. I'm at 7 mg of Pred atm, which I think is keeping the PMR "in control" and perhaps to some extent the rest of it. Difficult to tell what's causing what pain at this point, when one adds the Osteoporosis into the mix. Thanks for your reply.

[HeronNS in reply to Missus835]

(This is going to be a long reply which I thought about deleting, but will leave here for my own records! Skip to second paragraph.) In fact it was only hiding under the pred because I was taking pred. Had these skin symptoms off and on most of my adult life, but never really any satisfactory diagnosis, just symptom treatment. Never connection made between sarcoidosis which was found through lymph node biopsy when I was in mid-30s, and sporadic skin issues, including when I was in my teens the development of little lumps on my back (these were supposed to be something called lipomas but I heard the doctor telling my physician father that they were something else, and he probably said sarcoidosis, but stupidly all these adults were leaving me out of the conversation and I trustingly didn't ask for details). As a child I used to get a rash on my hands when handling things like raw carrots or orange peel and I remember when the household switched to Ivory Snow from Tide because apparently Tide residue in clothes was bothering my skin. A chest x-ray taken around the time I got PMR made "incidental note" of "old granulomatous disease" which could date from TB exposure in childhood, or later sarcoidosis activity... .

So my short answer is I'm glad the past nine years have shown that pred can successfully, with minimal side effects, treat my version of sarcoidosis. Other than the skin it's been non-symptomatic, but evidently has been having an effect throughout my body. An incidental effect is it can lead to a high Vitamin D level, so I have to take less D than normally people at our latitude need!

[Missus835 in reply to HeronNS]

As with everything else, you handle these things in stride. You're an inspiration to me. Thanks and keep us posted, Heron.

[Hopingsail]

oh I’m sorry to read this, Heron. Having got off pred after all these years I would imagine you must be gutted to have to reach for the all-too-familiar packet. I really hope that you and the Doc will get to the bottom of what causing the problems.

I’ve been reducing v slowly down to 1mg now, and have had a rash of teeny spots on both lower legs for some while. I’ve been treating them with v small amount of Hydrocortisone together with Doublebase cream but they are reluctant to go. They sound smaller than your rash but I wonder if there is some connection?

[HeronNS in reply to Hopingsail]

See reply to Missus835.

I'm not gutted, relieved there's something likely to give me a more comfortable life without too much trouble. I could carry on with a cortisone ointment but this is actually much easier and will help with other sarcoidosis issues which are less overtly troublesome.

[Hunter134]

Sorry to hear of your rash.Its like you said a couple of mg of Prednisone will clear it up and you can get on with enjoying your life.Hugs💖

[Gimme]

Sorry to hear that you have another blow to deal with. This auto immune stuff does seem to be the gift that keeps on giving. Hope you manage to stabilise it quickly.

[powerwalk]

Aw, its like sometimes i think i hate steroids so much but doomed to having it holding me together, back injections, etc,. Disappointing for you but hopefully a low dose will suffice.

[Hopeful424]

I'm sorry you have encountered this. I got a newsletter from my doctor's office about plaque psoriasis. It said those at risk of this include those having come off an oral or injected steroid like prednisone. Could this be the case?

[HeronNS in reply to Hopeful424]

Thank you. I'll keep your thought in mind. Hopefully not another thing to add to the list of ailments afflicting my old age! Maaybe I should be asking for a referral to a dermatologist? I believe the two conditions can be confused with one another and both respond to corticosteroids? However a quick look at internet illustrations, does look more like sarcoidosis. The psoriasis is quite frightening to behold!