Polymyalgia/Schnitzler Syndrome

[mikldiamond]

2 years ago diagnosis was PMR. A year later I have this rash and find I have Schnitzler Syndrome. Added image just in case anyone else expieriences it. Or I have both. I am beginning to think both for an injection I get monthly, Canakinumab should take care of my range of motion and muscle issues. Prednisone still needed. Was down to 10 mg again & now back up to 13mg but suffering in the am. Do we have any experience with CBD oil on this forum? I'm about to try it. What a roller coaster ride. Thanks much.

Thanks

[Soraya_PMR]

I had to look that up as I’d never heard of it.

Hope the injections work quickly for you. From what I’ve read they do the job, but like any drug come with side effects. Infection increase seems to be a problem, and it advises a check for TB before you start the drug.

Best of luck to you, hope you get relief.

[mikldiamond in reply to Soraya_PMR]

Thanks, yes took care of the rash. daily fever and malaise but if you had just witnessed the night I just had. Rolling over from one side to another takes so much energy. I'm up 5:30 am for it's just easier. Something in my stomach and 13 mg Prednisone and in a few hours I'll be fine and in 6 hours one would not believe my story of how bad I was earlier. I've become more silent about it.

PS used cb oil for 1st time last night not sure I'll even bother trying a 2nd time.

On a positive note I am so good the 2 ND half of the day.

Best wishes to all.

[Soraya_PMR in reply to mikldiamond]

Pleased to hear it zapped your rash. That looked sore. Was it itchy?

Have you considered taking your pred at 2am (for plain pred). That way it might prevent inflammation before it grabs hold of you. Might make your nights and mornings more comfortable. Or a split dose?

I did try cb oil once, didn’t notice a difference, but it was a while prior to the typical PMR pattern arriving. My son mentioned it again the other day, wondering if it would help. I wonder if it needs repeated applications? Cumulative effect. I know very little about it TBH.

wishing you a better night tonight.

[mikldiamond in reply to Soraya_PMR]

Thanks I'm working on that idea of very early. It's strange that many nights if I have a cramp and get up to walk it off I'm pretty good at 2am 3am and then by 6 am not good at all. Best to you, have a great day.

[Soraya_PMR in reply to mikldiamond]

I think you’re not unusual in that. 2-3am being pre cytokines dump. By 6am they’re rife and causing inflammation.

Early pred dose might just be your salvation. Fingers crossed.

[mikldiamond in reply to Soraya_PMR]

Thanks, let's see how it goes. 3 am alarm

[SheffieldJane in reply to mikldiamond]

Are you on coated Prednisalone mikldiamond?

A few hours seems to me to be a long time to wait for relief from Pred.

CB oil keeps coming up but I've yet to hear anyone with our condition rave about it.

I am glad you've zapped the rash.

[mikldiamond in reply to SheffieldJane]

Thanks, I think the truth is I need to go higher but am trying to hold at 13 before a slow tapper.

[PMRpro Ambassador in reply to mikldiamond]

Er - if you need a higher dose there is absolutely no virtue in refusing to take what you need - and even less in starting to taper!

[mikldiamond in reply to PMRpro]

Thanks PMR Pro. This morning set alarm for 3am was so much better getting up at 7.

[mikldiamond in reply to PMRpro]

What do doctors mean by maybe the Prednisone is actually causing your ongoing issues?

PS was asked to to tolerate 10 mg but I upped it to 13. Will see how this goes with 3am schedule.

Be well yourself

[PMRpro Ambassador in reply to mikldiamond]

Who is this aimed at?

[mikldiamond in reply to PMRpro]

Thought you might have a thought on this. Certainly didn't get an explanation from doctor's.

Thanks

[PMRpro Ambassador in reply to mikldiamond]

Oh right - read it the wrong way!!!!

A lot of doctors seem to have the idea that pred causes a lot of things that in fact we as patients know are due to the PMR/GCA or whatever we have. I don't know how we get through to them that most of us can tell the difference!

For example, they seem quite sure that weakness is not due to PMR - so it must be the pred. Part of it is they use a word differently from us - weakness for them can be measured and it isn't present according to the measurements, for us it is what we experience, we can't do things and to us it feels like weakness. There are other things too.

Does that make sense?

[mikldiamond in reply to PMRpro]

Yes that makes total sense!

Thank you

[pmrkitty in reply to mikldiamond]

I tried CBD oil and cannabis, I did not get any relief at all. Only thing that helps is prednisone. Good luck to you.

[mikldiamond in reply to pmrkitty]

Thanks, now I can say I tried CBD oil too. No relief. I just spent a lot of energy making it out of bed (2:45AM) to eat yogurt & take 13mg pred & I will with effort make it back into bed & awake much better at 6-7. During the day I will do pretty well I expect thanks to Prednisone. Best to you too!

[Hidden]

Eeek!! That looks sore...sounds like new dog breed. Hope it's feeling better!!

[mikldiamond]

Thanks and thankful it only looked bad. I am convinced I still have Polymyalgia Rhamatica also for if you saw me struggle to get out of bed this am you would understand.

[Soraya_PMR in reply to mikldiamond]

They’re both auto immune, and apparently one AI commonly leads to another....

Or maybe our bodies are just generally revolting, and hit varied systems just to keep us guessing?

[mikldiamond in reply to Soraya_PMR]

Well I'm thankful for being good 1/2 the time☺

[Soraya_PMR in reply to mikldiamond]

A glass half full 🙃

[HeronNS]

I have no experience with cannabidiol, but some years ago I had a rash on my hands which was treated with cortisone ointment but flared up whenever I discontinued application. A preliminary course on how valuable tapering is when dealing with steroids! However when I introduced food grade hemp seed oil, gradually tapering off the cortisone and using the hemp oil every day, the rash went away and did not return. Before this I'd literally tried every thing else I could find.

[mikldiamond]

Interesting, thanks for that info

[TooSore]

Just a comment about the night muscle cramps- increasing magnesium seems to work. Some people take a supplement but I hate to add another pill and make sure I have a magnesium rich food such as avocado, sweet potato, pumpkin seeds, sunflower seeds, almonds. It seems to help.

[mikldiamond in reply to TooSore]

Thank you, will try this also. Yes to sleep even 4 hours without waking would be nice.

[Kath567 in reply to mikldiamond]

I think if only I could sleep through the night and get restorative sleep, it would go a long way in healing. The bags under my eyes don't lie. Used to wake up at 2 am, now it's 4:30 am. Maybe a part of the puzzle is fixing our sleep quality? Magnesium, melatonin made no difference btw.

[mikldiamond in reply to Kath567]

I'm sure you got something there . My dream is someday will not be in need of Prednisone but for now thankful for it.

[LeafyLytham]

Hi, I tried CBD oil in the two weeks prior to taking Pred, I was so ill and desperate with long term PMR, that had been undiagnosed. It was a total waste of £69.99. Had no effects at all, neither positive or negative and tastes horrid.

My son, who thinks he's an expert on cannabis, came along and said I had been ripped off with the little bottle of CBD oil and then rolled me a joint of tobacco and weed!!! Needless to say, after a couple of deep puffs, I was experiencing a hallucinogenic effect of the cannabis, that was kind of weird as I'm not a weed taker. However, after an hour or so, I felt quite relaxed, found the sunset quite beautiful to gaze upon, mused upon the cloud formation and fell asleep for an hour! Then my PMR symptoms came back to the foreground with a bang.

An experience I haven't repeated since, Pred is my go to drug and its legal. My advice would be to those folk who are considering CBD oil, is don't waste your money.

Tina X

[mikldiamond in reply to LeafyLytham]

Thanks for your feedback. I am on 13 Prednisone. Started on 20 two years ago and never really made it lower than 8mg without issues. I have been told that maybe my symptoms now are from the Prednisone. Confusing

[PMRpro Ambassador in reply to mikldiamond]

Huh? After only 2 years I'd suspect the PMR is still alive and well...

[mikldiamond in reply to PMRpro]

Yes the original thought was I just had Schnitzler Syndrome but now more convinced I still have PMR also

[S4ndy]

I have been taking CBD oil since end of July. Its been helping me with the fatigue, stomach problems from the Pred and pain relief for osteo arthritis. I am finding it very helpful. I also made some CBD balm to apply externally which is working on my Hubby's leg cramps. Seems to help healing minor skin wounds like cat scratches as that seems to have slowed down whilst I have been on Pred. Definitely worth a try just remember to leave a two hour gap between taking regular meds and CBD orally. Not necessary if you apply it externally or vape CBD e-liquid.

[mikldiamond in reply to S4ndy]

Thanks much for the feedback and encouragement.

[onthescrapheap]

I started taking CBD for polymyagia Heart failure and COPD with the support of my GP as I want to come of steroids which I really struggle with and I have to say the improvement was almost immediate. I can cope with the pain of PMR and my heart palpitations has completely ceased. It's expensive but worth every penny.

[mikldiamond in reply to onthescrapheap]

Thanks for the encouragement

[walker5]

I've had a mysterious rash two times in the past, about a year apart. The cause was never determined, but both responded well to a short course of steroids. Both episodes started on my trunk and limbs and crept almost over my entire body except for palms/soles and face! It was primarily not itchy, but felt like crocodile skin. The second time had occurred a couple weeks before severe pains started, and I was finally diagnosed with PMR a few months later.

[mikldiamond in reply to walker5]

In my case I was on Prednisone for a year when the rash came. Sometimes on the days that I didn't have it I felt the itch. Weird

[GrannyReid]

This rash looks similar to mine. Thank you for posting. Will follow this up.

[mikldiamond]

It's there one day gone the next. Migrarates and for me was not painful. NORD has good information for you.