Further Update & Upcoming Rheumatology Appt Advice

[Paulx222]

Hello all!

Back again with my periodic update on my ongoing PMR diagnosis!

So.....after struggling when tapering from 12.5mg to 10mg of Prednisolone I finally heeded the advice of the vetrans of this thing and bit the bullet on upping my dose back to 15mg......I had been doing well on 12.5mg but the drop to 10mg hit me....so back I went.

It took some time....2 weeks as advised but things started to improve. I dropped down after 2 weeks....back to 12mg and I feel really goid still. Again, as advised I'm sticking on 12mg to see how things go.

In the meantime, I was asked by my GP to go for some blood tests as I have been struggling with pulsing or fasiculations in my calves. These are really pretty noticeable so I went to my GP and they sent me for some bloods.....

Came back with a few issues

Raised White Blood Cell Count 12.2

Raised Neutrophil Count 10.17

Low Serum Inorganic Phosphate 0.67

My GP called to discuss the results. He said he still feels its infection but he would send me for ESR and CRP tests so I could take these to my Rheumatologist a week on Thursday.....he wasn't keen to pass any further opinion other than to advise me to take it up with my Rheumatologist.

So.....here I am.....feeling a LOT better but now wondering why everything continues to be out of whack and why I have these visible and almost constant fasciculations in my body.....arms occasionally too.

All a bit of a nightmare as I feel it's 1 step forwards two steps back, but still, in myself, other than the pulsing and feeling of jitteryness in my hands I feel really good 🤷‍♂️.....I kind of hope all this is a side effect of either PMR itself or the Prednisolone.......I don't recall these sensations until this all started.

So....firstly, thanks for the advice to go back up and taper more slowly and secondly.....what advice would anyone give for what I should be asking Doctor Cheung when I see him next?

Many thanks again and hope everyone is as well as can be expected!

Paul

[PMRpro Ambassador]

Pred raises the neutrophils - and if they are raised, then so is the total white cell count. Did the GP also check your calcium and vit D levels?

Did you have the fasciculations before pred?

[Paulx222 in reply to PMRpro]

Hi PMR Pro......

No.....I don't think I did. I think it's ever since starting Pred that I've had the shakes in my hands and the visible fasciculations in my calves.

I can't be 100% but I don't think so.

[Paulx222 in reply to Paulx222]

Vit D looked normal I think.

[PMRpro Ambassador in reply to Paulx222]

Being on pred can lead to low magnesium in muscle cells and that can cause cramps at all sorts of level. Checking blood magnesium doesn't mean a lot - the blood acquires magneium where it can find it and the muscle cells are a major reservoir whihc can be almost empty while the blood level looks OK. Try magnesium supplements (careful as it can be laxative) and topical magnesium as sprays, oils, and foot/full baths with Epsom salts added.

[Paulx222 in reply to PMRpro]

Thanks x

I'll give this a go, got some on order now......is it worth bringing up at my next Rheumatology appointment and pushing it? I think I did mention it in December but it wasn't as bad as now and he just shrugged so I left it.

[PMRpro Ambassador in reply to Paulx222]

If the magnesium doesn't help, then definitely point out it is worsening. They aren't particularly cognisant of the role of magnesium in the UK - not pharmaceutical enough! But here in Germanic central Europe, the first thing any doctor will ask if you complain of cramp or muscle twitches is whether you have tried magnesium - sold in industrial quantities in every supermarket and pharmacy! Only if that doesn't help will they look further.

[Paulx222 in reply to PMRpro]

Right. I'll give it a go.

Thanks

[PMRpro Ambassador in reply to Paulx222]

Hope it helps.

[Paulx222]

Me too!

Any brands you'd recommend?

[PMRpro Ambassador in reply to Paulx222]

Can't help there - I live in Italy, no idea what is on offer in the UK!

[ChoralG]

Dear Paul,

I have no experience of the symptoms you are experiencing, so am not best able to advise you, unfortunately. I am now taking 1mg prednisolone or 2 mg on alternate days, as I am trying to cut it out completely. This is the second time I have tried this and it seems to be going better than the last attempt a few months ago. I hope you can find someone to advise you better. All the best. G

[Paulx222 in reply to ChoralG]

Thanks so much 🙂

Good luck with the tapering!

[Worthy10]

Hi Paulx222. I was diagnosed with PMR March last year and put on 20mg of Pred. Since I have tapered to currently 9.5mgs of Pred, but this is with regular consultations with my GP who has been brilliant. Tried dropping by 1.5-1mgs but did not work. I have been tapering 0.5mgs every six weeks and seems to be working for me. First day or two after the reduction I do feel it slightly but then seems to settle. FYI I also take :- Calcichew, alendronic acid omeprazole. Also after advice from here K7 and vitamin D. And after research turmeric and chronditon. I am back in gym but pushing half the weights I did before PMR, increasing slowly. Also trying cacao powder at the moment. Apologies for the length of this reply.

[Paulx222 in reply to Worthy10]

Many thanks for the response. Glad you're back I'm the gym!

I must say, my general symptoms are back to being under control at 12mg but the fasciculations are quite an issue....worrying but still hopeful my diagnosis is correct

Will speak to the Rheumatologist to see if other investigations are needed.

Thanks again!

[Pjso]

I was on Prednisolone for 2 years. It has been three weeks since I stopped taking it for my PMR. Each time I decreased my dose I had side effects. The first time this occurred I thought that my PMR was back. My eye consultant (for my TA) put my dose up. My GP was supportive and discussed the side effects from reducing which are very similar to the symptoms of PMR. He said that the aches and pains could last for up to a month. I have reduced my dose slowly and accepted the fact that I felt ill (even a 0.5mg decrease was painful). Each time my ESR and CRP results were good. I did it with the support of my GP. I did not up my dose without medical advice. While Prednisolone treated my PMR I was very aware of its side-effects on my body. As a result I wanted to come of it and I am grateful that my doctors have slowly taken me off the drug. Its early days yet, but so far I seem to be doing fine and my body feels a lot better. I am still under the care of my eye consultant. Fingers crossed that my PMR and TA do not return.

[Touting]

I was on 60mg prednisolone for my GCA ,the only thing I can say is when you do reduce on the drug it has to be don very gradual and slow it took me a year to reduce to eighteen months to come down , I do hope all goes well for you