Symptoms improved. Plan of action going forward. Do’s and Dont’s

[LBM1953]

Hi All. Increased Pred from 20 to 25 mg six days ago. Symptoms have improved markedly. Blood test results from yesterday also going in the right direction. CRP down to 22 from 106 (still too high though). ANCA test for vasculitis was a weak positive but the follow up tests were normal. PV tests gone from 2.06 to 2.01 to 1.7 so going in right direction. Blood sugar has gone up though from 49 to 51 (I was 42 before this all started). Diabetes problem? Doctor is talking to the hospital to see what tests need to be done (Glucose Tolerance)? Apparently steroids can give you a high Hba1c result when you don’t have diabetes. Doctor is also going to request a base Dexascan. Vit D and Calcium supplements to be left until after the Dexascan (if required). More blood tests next week. With regard to the PPI, she said that if I stop taking it then I may be OK, I may have some symptoms, or I may just start bleeding without any warning. She said it was my decision. Would like to stop taking them but don’t want to have a (sudden) further problem without any warning. Hopefully now my symptoms are under some form of control (touch wood). I now request advice on what to expect and plan for going forward. After three weeks of so much pain I have hopefully settled into 25 mg of Pred a day split 17.5 mg a.m. and 7.5 mg evening, and my pain/stiffness levels are down from 9+ to 2/3 or even less (residual symptoms generally shoulders, upper arms and left thumb). Can’t believe how far I have come in six days. Energy levels are compromised but I was expecting that. Doctor thought I may want to increase the dosage further (Rheumy she spoke to last week said 30 mg if necessary) to try and get rid of the residual symptoms, but I would prefer to stay as I am and see what the next round of tests reveals, and increase only if my symptoms or markers deteriorate. So what happens next? How long should I expect to be at this level before before tapering (or will further tests determine)? Also are there any absolute NO NO’s as far as PMR is concerned? I understand that (moderate) exercise is good providing it doesn’t have a retrograde effect and I have been out for a couple of short walks in the last few days with no effect on my pain. What about alcohol? I don’t drink huge amounts, and I haven’t partaken since being diagnosed. All being well we should be going on holiday to Cornwall on 3rd July for two weeks so would the odd beer or glass of wine be out of the question? Should I be going on holiday at all? Cornwall’s Covid rates are increasing significantly and I am unsure whether I am at greater risk from Covid (or anything else) if I have PMR and all the incumbent medication (I have been double jabbed). Help!! Regards. LBM1953

[PMRpro Ambassador]

The GTT probably won't help a lot - the reason the Hba1c rises is because pred causes the liver to release random spikes of glucose whether you have eaten or not - the best you can do to keep the Hba1c down is to reduce the carb intake you can control in your diet. That also helps reduce the risk of weight gain on pred because every time there is glucose in the blood, you secrete insulin and it is the insulin effect that leads to weight gain.

Reducing - you need your symptoms well under control though not necessarily pain-free before you get to that - and your blood levels need to be well reduced, in normal range and preferably stable before reducing the pred much.

You really ought to be taking the calcium/vit D now as it is thought the greatest effect is in the first few months and at the higher doses of pred. Leave an alendronic acid decision until after the dexascan though. Many of us don;t take a PPI - taking pred with food, especially yoghurt works for a lot of us. I have never taken a PPI in 12 years.

Your holiday? That is a personal decision. Is it a hotel or self-catering? Will you have to mix with other people much? I assume you had both your vaccinations before the pred? If so, you will have developed the immune reaction - it is if you were on pred before the vaccinations that you are at more risk. I drink wine, a small glass with dinner every night, not more. I rarely drink except at a mealtime - that's the usual way here. How are you travelling there? Is it far?

Real NO-NOs? Can't think of any except don't overestimate what you can manage - on holiday for example: would you manage whatever you are planning at home? If you couldn't, you won't manage it on holiday either! Avoid unnecessary effort where possible - take the lift not the stairs and keep your energy for other things. Don't feel forced to do something if there is a risk it might be too much and if you have a busy day - do NOT plan anything for the next day. Just being with people, wandering around shops, a garden, can turn out to be much more tiring than normally. Even sitting at a table having dinner is more tiring in a restaurant is more tiring than at home. Heat and sun is also hard work - sit in the shade with a book, not out in the sun.

It won't always be like this - it will be better next year. I promise!

[LBM1953 in reply to PMRpro]

Great advice as usual, but I am taking you at your word about it being better next year!! 😀

[PMRpro Ambassador in reply to LBM1953]

You will look back and see how far you have come! No-one believes me but it is true!