Advice: Having spent considerable time reading... - PMRGCAuk

PMRGCAuk

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Advice

Having spent considerable time reading every response to my post,three times in some cases,I cannot believe how it has affected my attitude in such a short space of time.It feels as though at last I am getting the advice that has been missing for the last few months so thank you to everyone.

One question please,I now realise that some of my issues are self inflicted.Having dropped so quickly to 15mg my symptoms are returning,pain in my shoulders/across my neck,back of my arms stiff hands and knee joints etc, Can anyone tell me that if I increase by 5mg to 20mg am I causing alternative problems ? I am not due to speak with the Rheumatologist until 19th May so having jacked up my blood markers I would like to see them falling. ( CRP 87 on 4th March and ESR 93,both almost certainly affected by the pneumonia )

So,can I safely increase my dosage to 20mg and keep the GP informed ?

Written by

yorkieme

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13 Replies

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DorsetLadyPMRGCAuk volunteer5 years ago

Hi,

Glad we have helped you so far.

It sounds as if 15mg is not enough to control things - and although it is a “recognised” starting dose for PMR, very often it’s not enough - and with the other things going on I’m not surprised it’s not sufficient for you.

Going back to 20mg does make sense, but please “discuss” with GP rather than “inform” him! You need him on side even if he’s not very good. If you cannot get an appointment does the surgery have a facility to contact by email? I think ours is called Econnect and you can access via surgery’s webpage.

Or can you contact Rheumy Dept - you should have a helpline number.

And probably a good idea to stay at 20mg for 3-4 weeks to let things settle.

PMRproAmbassador5 years ago

20mg is a perfectly normal starting dose for "just" PMR - and your GP was perfectly happy to hand out 60mg so I doubt he'll complain too much. Here is a link to the most recent guidelines in case you don't have them:

rheumatology.org/Portals/0/...

where it mentions the recommeded starting dose to be the lowest effective dose in the range 12.5-25mg. As a rugby player I imagine you may be of sturdy build - and bigger people usually need a bigger dose.

In managing PMR you have to concentrate on the PMR side of things - and for that you need enough pred. Even 1mg too little will allow the inflammation to build up again and you are back to the beginning. Lifestyle modification will also help in terms of dose - several people have said they are finding it easier to reduce under lockdown!

Devoid5 years ago

Hi the only thing I would say is make sure with each drop you rest up for a few days. At first I didn’t realise how much this helps as I just thought I was hardly doing anything, compared to my normal life!!, but you are dealing with something totally different to normal, so rest and little drops seems to get you there. Very much tortoise and hare situation 😊

Pixix5 years ago

Just a thought...when 15mg didn’t work for me (PMR Only) I increased to 16mg & it worked like a dream. Others here are much more experienced than I am, but, in your shoes I’d up it slightly less & see if that works, for a very short time, then up it again, if necessary. Had to up mine recently due to a quick taper and a nasty flare, but found that 1mg can make a difference! Good luck, S x

yorkieme5 years ago

Many thanks for your reply. I think that if I hadn't messed around with my dosage,part ignorance part desperation I think I would have been o.k. However,lesson learned.I have now found this forum and received some good advice from it.

I have started a diary going back to November last year and tried to remember the crucial stages of the last five months.

Prior to leaving for a five week break in The Canary Isles my wife and I returned from two weeks in Whitby and walked into the Novovirus,both of us violently sick for a few days.I then caught a severe cold,(already diagnosed with Non Hodgkins,) couldn't get rid of it and ended up on antibiotics for chest infection.

Mid December PMR struck,steroids seemed to get rid of it so off I went to Fuerteventura,few days later it came back at me and completely disabled me,for four weeks my wife dressed me/did everything.German private clinic made a fortune out of prescribing Tramadol which had a nasty effect on me.

Returned home on initial 15mg pred; and my G.P. then increased it to 60mg because he believed it was GCA.

I didn't know that I had pneumonia throughout the time in Fuerteventura,heaven knows how my wife got me home in one piece.The doctors consultants still cannot figure it out.Been in hospital twice in the last month,both occasions ended up in the Coronavirus ward in Bangor but sent home on both occasions showing negative. Last week rushed to hospital with low blood oxygen high temp' 40.1

I thought I knew better than the professionals and to be honest I'm sitting here laughing at my own extreme stupidity, and my impatience to get better.

So I am starting again but listening to other wiser voices. Take care.

PMRproAmbassador• in reply toyorkieme5 years ago

I can understand going to Fuerteventura for 5 weeks - but Whitby for 2???? No wonder you caught something nasty The doctors in Whitby leave a bit to be desired too.

yorkieme• in reply toPMRpro5 years ago

We were actually closer to Robin Hoods Bay, Northcliffe with stunning views. Some people never learn,we have it booked again in October.lol.

PMRproAmbassador• in reply toyorkieme5 years ago

I struggle in the summer never mind winter!!! Our daughter was suggesting we went there to a holiday flat for xmas next year - she has a tiny flat so difficult to stay with her. Especially by the time her husband has his xmas decorations in place We used one not far from S'bury's last summer, very nice, not bad view but you stepped out the door and got blown away. I've lived here too long ...