PMR update

[Mitziecat]

Hi everyone.

I have not posted since Christmas but have been following & commenting when I can. Good advice is usually given by my fellow sufferers who have had the condition for a while.

I posted about twitching muscles about 2 months ago and following advice I did buy some magnesium spray but only used it a couple of times. I saw my Rheumatologist in December & full blood tests were done. I am not on calcium supplements but take AA. Both calcium, magnesium and inflammation markers were normal. I suffered with some lower back pain, worst on one side, especially after reducing pred. Consultant did a back Xray which was normal & I had a CT scan yesterday but about 2 weeks until I get the results. However, back pain has settled & muscles only twitch occasionally.

I reduced to 5 mg pred on Boxing day & all good. Rheumatologist have told me that from now on will be difficult and to go slow. He has advised next reduction of 5 and 4 for a month, then 4 for a month, the 4 and 3 and continue the pattern monthly. Has anyone done this pattern of reduction? I am gradually increasing my exercise. Pilates weekly and have recently gone back to a gym and got a programme from a personal trainer. He was fascinated to hear about pmr and understood that I would not be pushed beyond my limit.

I am trying to be positive & with an open mind, working back to normality. I love to exercise and have missed my more energetic gym classes. Back to 8-10000 steps a day and sometimes more. I am encouraged by the support on the forum and comment when I can add some value. I was only diagnosed in May and started pred in June at 15 mg so journey so far has been quick & so hoping it will be uneventful.

Positive thoughts are with you all and thank you for all the advice and support on the forum.

[Hidden]

Sounds positive. 're magnesium..i think it was pmrpro who said defiency in muscles doesn't show on blood test. I have started taking mag zinc calcium supplement and my muscles calming. I definately think overuse made mine twitch and and get really sore.

[Mitziecat in reply to Hidden]

Thank you for your reply. I was taking supplements prior to diagnosis but was found to have too much in my blood so that was the reason it wasn’t prescribed. GP is keeping an eye on it. Trying to be careful not to overdo exerecise as I know it can stress the muscles.

[JulieR2]

Wow that is brilliant progress! I am using roughly the same mode of reduction but have stuck a few times. I am now on alternative 4mg/5mgs. I have been on prednisolone since Feb 2017 though and thought I was moving quickly. Good luck hope things keep going as smoothly

[Mitziecat in reply to JulieR2]

Thank you JulieR2. Are you also taking AA? 4mg/5mg is my next step and hoping all will be ok.

[JulieR2 in reply to Mitziecat]

Hi there I stopped AA as I have had numerous dental problems. I did discuss this with my GP. Who was supportive. I am hoping to have a dental

Implant in April or May and need to ensure that the bone growth in my jaw where I had a tooth out is at its best. I didn’t have a Dex scan but I am 52 on HRT and having read the horror stories will take my chances without

[Mitziecat in reply to JulieR2]

I am thinking about stopping it if I am lucky enough to get below 5 mg. I haven’t had a Dex scan. May look into having it done privately if it cannot be done on the NHS.

[piglette in reply to Mitziecat]

Hi Mitziecat,

Your Dexascan should be available on the NHS. It seems to depend very much on your doctor’s inclination towards the idea and how much you are able to push them.

[Mitziecat in reply to piglette]

Thanks for your reply. I will ask my GP about it and hopefully get it on the NHS.

[piglette in reply to Mitziecat]

Good luck!

[yogabonnie in reply to JulieR2]

once again.. I cannot IMAGINE being prescribed AA without a DEXA scan. It's like getting antibiotics for a virus. why would a doctor do it? Anyway. good for you for stopping and best of luck with your tooth and jaw!!!

[HeronNS]

Just a thought that maybe if your tablets can be cut (uncoated) you consider .5 taper steps, especially as you get really low. Don't forget, from 5 to 4 is still a 20% drop.

[Mitziecat in reply to HeronNS]

That is definitely an option if current dosage do not work. Tablets don’t look as though they can be cut & not sure if they are uncoated.

[HeronNS in reply to Mitziecat]

If they are uncoated they can be cut. A bit fiddly with 1 mg, but practice makes perfect! But coated ones must not be cut.

[Mitziecat in reply to HeronNS]

I will check the information leaflet or sith the Pharmacist. Thank you.

[Hidden in reply to Mitziecat]

Make sure you but cutter at same time if you can. Really easy .

[HeronNS in reply to Hidden]

My pharmacist actually gave me a freebie from a drug company (name long since worn off) which works a treat, but it took me a while to figure out how to get it to give me two good halves, not a half and a bunch of crumbs. Position tablet carefully, then close cutter firmly but not too vigorously, holding the cutter in the air, not placed on the counter.

[Hidden in reply to Mitziecat]

The ones I use..coated 5mg dark red while Uncoated 1mg are white.

[Mitziecat in reply to Hidden]

Mine are white so looks like they are uncoated.

[Hidden in reply to Mitziecat]

If you have the box and/Or the info sheet it should say what they are in uk- e.g. mine say pred 5mg gastro resistant but 1mg just say prednisolone. Usually sheet tells you what colour each dose of coated is. Hope that helps.

[PMRpro Ambassador in reply to Mitziecat]

You could also try the Dead Slow and nearly stop approach - you can reduce 1mg over about a month but it is gentler:

healthunlocked.com/pmrgcauk...

[Mitziecat in reply to PMRpro]

Thank you for your reply and advice. Good to know that I have options and will certainly use the one that cause me less problems. The DSNS method comes highly recommended.

[Hindags]

Congratulations on your progress. Please keep us informed. Iirc, PMRpro has said that alternaing doses may not be optimal for PMR. I tried alternating between 9 and 8.5 but when it was time to go to 8.5 straight, it was not so good. I found PMRpro's 26 day taper got me from 9 to 8 without problems. Im now on day 14 of her 38 day taper, going from 8 to 7. So far so good but the next week or two will be the real test.

I also appreciate being able to print it out. You can find the tapers by searching thd forum.

[Mitziecat in reply to Hindags]

Thank you for your encouragement. I will certainly keep you updated with the progress. I am curious to know how I will get on alternating so tempted to see how far I can go. If I don’t try it I will always wonder if it would have worked for me.

[Marlenec]

Mitziecat

DSNS method got me from 10mg to 5mg no problems at all. Then saw a rheumatologist who said 5 and 4 alternate days. Did this for 5 days and had all Pmr symptoms back again plus really depressed and crying. So back on 5 and feel so much better.

You've done so well, be careful, don't spoil it.👍

[Mitziecat in reply to Marlenec]

Thank you for your reply and also for the thumbs up. I am anxious about ruining my progress to date. A lot to think about in the next 10 days before my reduction.

[Marlenec]

Oops my last post Imogee is a thumbs up for well done/good luck but now it's posted it does look rude to me. Won't use again!

[Suet3942]

Hi Mitziecat.

You have done really well if you were only diagnosed last year. I have had pmr for over 4 years now and I’m on 5 mg pred at the moment. I’ve been up and down with the dose as I have had multiple flare ups. I’m to see rheumy nurse on Friday. I’ll be interested to see if my inflammatory levels gave gone down because I feel a lot better. Touch wood!! Onward and upward.

[Mitziecat in reply to Suet3942]

Thank you. I do wonder if the progress was due to a very quick diagnosis & referral. I may have had minor symptoms for a while but diagnosis made within days of stiffness. I have withdrawal aches for just over a week normally & then ok so will be monitoring this closely on next reduction. Any worries and I stay with 5 until happy. So glad that you feel better and hope your blood tests are good. Let us know. As you say onward and upward