This morning g I had my first follow up after being on 15 mg Pred for 4 weeks.
I confirmed there had been a big improvement in the lower part of the body and in the tender spots abd the hands and wrists, but that the shoulders and neck were still painful though better. I also advised about the headaches and eyes.
He then look at my latest bloods and said he was somewhat perplexed at the low levels of inflammatory markers present and said that overall the bloods were pretty normal apart from evidence of pre diabetes.
He has now reduced the pred by 2.5 mg starting tomorrow and I then have to have more bloods taken a week before my next review.
To be fair he said to get in touch if I had any noticeable deterioration but to bear in mind the reduction might take time to allow my body to adjust.
I did try to push him on what his thoughts might be regarding the lack of inflammatory evidence but I honestly don't think he had an answer
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Bridekirk
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Were the markers raised before pred? Up to 1 in 5 patients with PMR/GCA have markers in the normal range before diagnosis and for some reason even more find the markers fall and stay down as soon as pred is started. Otherwise, all normal markers show is that the pred is at a high enough dose to suppress the inflamamtion - which is what it should be doing.
Hi PMRPro... Weell as you know my first encounter with the doc was all a bit flustered as I didn't know really what it was all about.
He put me on the Pred immediately and told me to book a blood test when I could get an appointment, so in fact I was already 4 days into the Pred before I gave blood and so there really would not have been any base line to work from.
He did say today he was paying particar attention to the ESR numbers though
Although 2.5mg drop is often used as a standard drop by some doctors it is often way too much in one go, both from the point of view of withdrawal symptoms and leading to insufficient inflammation control. You are still symptomatic so I wonder if 2.5mg drop is asking for trouble and you may need the 6 weeks on 15mg. 1mg might be safer. Low blood markers don’t necessarily tell the whole story and symptoms can come before they rise if they ever did.
Regards your shoulders and neck, are you looking after them regards activity?
Hi SnazzyD. I was tempted to question a drop of 2.5 but he is a new face in our surgery and didn't want to question his judgement, though he did tell me to expect a few days of feeling uncomfortable due to coming down so much.
He said if I still feel bad after 4 or so days to get in touch.
I have 28 days now on 12.5, but as you noted yes I do have symptoms particularly in my upper arms shoulders and neck us the damed headaches.
I am making g sure I get good excersize and do walk a lot ( though not much over the weekend with the sbiw and such. )
He did as much as admit that he was working a bit in the dark with me and was "trying things out "
Every patient leaves a doctor in the dark as they are individual in their PMR journey. Therefore, they need to listen to them and if in doubt, go softly softly unless there is a clear medical reason not to do so. At least they recognised that you may feel rough from withdrawal symptoms.
When you say, you get good exercise, what do you mean? Sorry if you’ve already said in other posts.
That is the whole point of our slow approaches - it reduces the likelihood of the steroid withdrawal feelings. If he's expecting it - there is no reason why he shouldn't think about mitigating strategies.
And I'd say moderate the exercise while tapering - give your body a chance!!
Thanks Snazzy & PM have taken on board all you say.... I have just looked up the report on my consultation which is interesting. I don't feel I should publish it on here, but there seems to be no suggestion that this isn't PM but he also suspect Myethenia Gravis it would appear. Something I gave never come across
Do you think your overall symptoms have improved by at least 70% since starting Pred, including shoulders and neck? It is not a good idea to reduce if you have a lot of pain. Having said that, a lot of people never become totally pain free.
You should really compare the symptoms to what happened to them just after you got started and if things are getting worse then you should stop reducing as PMR always wins if you let it.
I logged into my NHS App so have a look at the results of the bloods. I am not sure which heading is relevant to "inflammatory Markets" nonthless all results were within "Mormal" Range apart from the diabetic one which was showing 43 mmol.
Which is just into pre-diabetes. Below 42 is normal, 42-48 is prediabetes. Inflammatory markers are ESR and CRP, sometimes they look at ferritin. They will all appear in different groups I suspect.
It's odd that your GP said he's interested in your ESR marker. The last time I saw a Rheumy, she said that the ESR isn't used any more. Instead they use the CRP measurement when deciding on what to do about patient's PMR-like symptoms.
I must say that from what you've written, you needed a higher starting dose in order to clear ALL the pain from your upper body. You say you were started on 15mgs. Perhaps a starting dose of 20mgs or even 25mgs might have been better, to make sure that all inflammation and pain is dealt with, before even thinking about reducing your Pred dose.
Also, did your GP take into account the fact that headaches could mean you've got GCA, either instead of, or as well as PMR?
Regarding the headaches, do painkillers have any affect on them? If painkillers do work, then could you get your eyes tested properly by one of the high st chains? As I'm retired I get free eye tests, but had to pay £35 for a complete run down on what's going on with my eyesight after I got some grit in my left eye, and now have floaters that get in the way of reading, although long distance sight isn't affected much. I also wear glasses, and have had to have a new prescription thanks to the damage the grit did to my left eyeball.
If painkillers don't touch the headaches then that is a warning of possible GCA, and you'd need to get that checked out IMMEDIATELY, in order to save your eyesight. Ask Dorset Lady (among others on here) who weren't treated quickly enough for their GCA, about the devastating effects of not treating it quickly enough.
It's all very well for him to ignore your headaches, but it's your eyesight that's at risk, not his, so it might be a good idea to get a second opinion if he's just going to mess about and fob you off while he learns more about your illness.
Sad to say, but you've really got to push your case nowadays, as doctors don't seem to take in what the patient tells them. Either that or they've been told by their teachers at medical school to ignore patients as they don't normally know anything about medical matters. I would suggest that in our case (GCA and PMR patients), we DO know about the medical matters that apply to us, and the doctors should take note of what we say. If they don't they could be reported to the GMC for negligence.
"The last time I saw a Rheumy, she said that the ESR isn't used any more. Instead they use the CRP measurement when deciding on what to do about patient's PMR-like symptoms."
Well, nothing changes the finding that PMR was often more reliable in PMR and she'd get nowhere looking at my CRP!! It only changed in response to severe atrial fibrillation episodes!
I'd disagree though - unless it has changed again, there was a period where there was a lot of effort made for trainees to meet patients with conditions to give our side of things. We used to have several people who did "Meet the patient" sessions with medical students.
And I still like this meme
"Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it"
Of course, I can't find any of the t-shirts or cartoons I have seen - but here are sources
To be honest, the whole reason I mentioned the other ongoing neck, shoulders, headaches and eye worries, was that I thought it .ight either relate to side effects of Pred ( unlikely since I was having the headaches orion to oresentung to the GP) or that it might be GCA. In no way did I suspect Myesthenia Gravis ( which I have never heard of )
I take Paracetamol, but it doesn't really help because the headache had its in range of symptoms. ..pain like a strap over each eye or one or other of the eyes. A feeling that eyes are bulging or under pressure, very sore dry gritty eyes, lids on opening without a lot of effort, and generally muses in the face tight and stiff.
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