One week on Pred

[tazman3]

Since I started pred this time last week I have calmed down quite a bit. I have done endless study and read a lot on the subject. I have come to realise that the NHS is not great on this subject and finding a sympathetic ear is a lottery. Very scary.

One week ago I had the most horrendous pain and stiffness and could barely move. I took my first dose and waited anxiously. Not much happened apart from my throat not being painful. By the end of the day I felt no better and next morning the throat pain was back.

I felt like the pred was fighting to 'get in' but needed a push. So, I decided to increase to 20mg. Each day improved and I am now feeling so much better. All my old pains from various conditions - OA, Fibro, Bursitis, nerve damage etc - are still there. But, compared with the pain from pmr, I can cope with the help of my Hand Unit Consultant, pain meds and growing knowledge. I can't remember when I was pain-free so at the moment I'm back to normal!

I do have to admit that I am struggling with my mental health. I am having mood swings like never before. One minute I'm so glad that I'm on pred and the pain is being controlled. Then along comes the little devils I have always lived with, telling me how my future looks pretty miserable and why. It's a silent battle I have fought for many years and I do take medication.

This time next week I am due to see my GP. I am getting worried about telling her that I changed up to 20mg without consulting her. I would like to go prepared with an idea of when and how to start tapering. Most of the information I have read starts at 15mg and then tapers. What would you kind people suggest I put to my doc from 20mg. I fully understand that I have to take things slowly and want to do this properly.

I find it stunning that we have to prepare a plan before going to our doctors! I have always dealt with lack of good care in mental health services in the NHS and very long waiting lists. Looks like I have another condition linked to lack of funding and huge cuts. With my luck, who'd have thought it...…..?

[SnazzyD]

Hello, whatever you do, you must be honest with the doc, this is a partnership even if you feel like you’re going in to battle. On the plus side she was going to put you on a higher dose anyway but as you put it you “freaked out” and you were prepared to go to 15mg. So it’s not as if they had to talk you down, it was the other way around. This has been a good experiment despite what the little devils say and it should give the doc some useful information. Sometimes people need 25mg to get PMR under control and if you’re getting throat pain, then as has been said already, GCA might be a risk here. It is good that it has been controlled with the increase.

Perhaps you could ask for a telephone consultation in the meantime to avoid the buildup of trepidation about fessing up. From my relatively inexperienced standpoint I’d stay on 20mg because she was angling for a higher dose anyway, monitor the symptoms and avoid flapping about with reductions because if this is the right dose, you need to be there for a bit. Those that know better will be along soon.

[tazman3 in reply to SnazzyD]

Well, the postman has just delivered a letter from General Rheumatology at my local hospital! The appointment is for Friday so now I'm wondering why. After expecting a 25 week wait I don't know whether I should be pleased or worried. Plus I now have to confess to a Rheumatologist that I have increased my start dose without 'permission'.

Have I been fast tracked because I did have a good moan at my GP surgery? I complained that the two docs I had previously seen were disinterested and didn't really care. They didn't appear to know much (if anything) about pmr and didn't seem concerned about my increasing pain. After listening to people on here, I went back and insisted on a third appointment. 3rd time lucky for me as this GP was sympathetic.

I'm now worried that GCA is suspected, as some here have intimated. My anxiety has shot up again. If I did have GCA would 20mg be doing the job for me now, or is it just masking?

[PMRpro Ambassador in reply to tazman3]

Tell them the truth - she wanted to use 20mg but you were scared and 15mg was agreed on. Then you realised 20mg might be better when you didn't get a good result. And it was.

To have an appointment so soon probably means the rheumy has looked at the symptoms we also looked at and considered GCA might be a possibility - and, at a guess, had a slot for this week that had either been kept for a fast-track or someone had cancelled. Either way, it could be used for you or it would be wasted. Either way - result.

Stop worrying and see what turns up on Friday. For the vast majority of patients 20mg will manage all that is going on unless they have visual symptoms. Whatever you hear people say about "pred just masks the symptoms" they are talking off the top of their heads. That is all pred can do - it mops up the inflammation that is causing the symptoms so they are relieved. That isn't masking, that is management. Just like injecting insulin is managing diabetes - it isn't cured but the symptoms that are the problem are dealt with so they cease to be a high risk. If it were GCA and you were not on pred you would be at risk - but the fact that most of your symptoms have improved means that the pred is working already.

[SnazzyD in reply to tazman3]

I’d say it’s all working out quite nicely, early appointment and control of worrying symptoms showing you already have the right dose at the moment. And I’ll repeat, it’s not like you went to a dose the GP wasn’t happy with, you are doing what was suggested in the first place.