prednisoChanging from Prednisone to ?

[Jomaur]

I have now been taking Prednisolone for 4 years for PMR. I was started on 20mg and gradually tapered down and was down to 6 mg by the end of that year. However I had an accident where in pitch darkness I fell over some roofing tiles left in a neighbour’s front garden and fractured my left humerus in 3 places. I managed to recover quite well without surgery but then I developed severe back pain and it became painful to walk. An X-ray showed degeneration of the spine but in the meantime my dose of Pred had been increased. I was later diagnosed with Facet Joint Pain. By October last year I had managed to taper down to 6mg but following a Covid booster I experienced a flare with high ESR levels and my GP increased my Pred dose to 10mg. Following a lower ESR level one month later this was reduced to 9mg and this Monday I had another blood test and my ESR level was 21 but I am still getting stiffness in my neck, shoulders, tops off arms etc. The problem is that the increased Pred has caused my Blood Pressure to be very high. I have had hypertension for about 30 years and am now on a lot of BP meds and also have Atrial Fibrillation and also a Pacemaker.I have put on a lot of weight since taking Pred which I know doesn’t help my BP.

Has anyone changed from Pred to Methotrexate or a biologic medication. The Pain Management Consultant did suggest that could help with BP and weight but my GP seems reluctant, Any advice would be really welcome and apologies for such a long post.I have a telephone consultation with my GP tomorrow morning so other people’s experiences would e very useful.

[PMRrunner]

I take methotrexate with prednisolone but still have to taper the prednisolone very slowly. For me it's certainly not a replacement but something I take that has allowed me to reduce my prednisolone dose down to 2mg over a number of years.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your fall etc….

With PMR you won’t get offered a biologic - as yet not authorised for use in UK… and even if you are on MTX that only helps you reduce Pred more quickly- it’s not a complete replacement for most.

[Jomaur in reply to DorsetLady]

Thank you..I was surprised when the Pain Management Consultant suggested it to me as I had not read of it being used for PMR here in the UK.I am keen to be able to reduce my Pred dose asap because it does increase my BP, weight and blood sugar levels but I do know the drawbacks of doing a taper too quickly. Just so annoying to have had the last fare whic I can only put down to my Covid booster.

[PMRpro Ambassador in reply to Jomaur]

What do you mean by "it"? A biologic or MTX. A GP can't use either - must be a rheumatologist.

[Jomaur in reply to PMRpro]

Yes I do realise that neither can be prescribed by a GP so would need to be referred to Rheumatology which here in the UK could mean a 12 month wait on the NhS.My BP meds have been prescribed by a Cardiologist and my BP was fine until I had to raise my Pred dose from 6mg to 10mg and I am aware of the need to cut carbs to lose weight but it is also a well known side effect of steroids to increase appetite and weight, not only by what you eat but also by fluid retention. We have a cat who was put on Pred for a number of months, who ate exactly the same as she did before yet put on weight and even after coming off the Pred still retains a lot of the gained weight. Well done you if you managed to lose so much weight while on steroids but everyone is different and I am also hampered in the amount of activity I can do because of my back problem. Stress also plays a large part in elevating BP and we have had serious family problems so that might be another reason for my BP increasing. Incidentally today it is down to a very good level so hopefully improving.

[PMRpro Ambassador in reply to Jomaur]

I hear you - similar problems here in terms of exercise and in fact exercise is now realised to not help in weight loss. When you cut carbs, it often has the pleasant side effect of cutting the cravings as you smooth out the rollercoaster of BS levels that rigger them, Since the most important carbs to cut are the processed ones, you also cut your salt intake which is also important in the fluid retention pred can cause. There is a great deal of discussion of these factors on the forum and I am by no means the only person to have weight control success by cutting carbs - SnazzyD and Koalajane also have interesting stories. Stress is another thing altogether - and it will definitely be a factor.

[SnazzyD in reply to Jomaur]

When I started on 60mg Pred my usual high exercise rate was stopped in its tracks. Apart from the GCA I went from being normal to being able to only walk gently with a craving for food greater than I had ever experienced before. It was quite clear that the glucose spikes from the Pred’s effect on the liver was going to cause issues including increased diabetes risk. This why your cat put on weight with usual diet. I had to cut out all pasta, sugar, potato, flours, rice and maize. In doing so my swings in blood sugar levelled out and my cravings too. I stuffed my face as long as it was protein or veg. I was also quite sensitive to Pred’s tendency to make one retain sodium and was very prone to fluid retention to the point that I had to virtually cut out all salt or have very heavy eye lids and feel wobbly all over. When I got to well under 10mg I reintroduced salt because low adrenal function had the opposite effect.

[PMRpro Ambassador]

If you have PMR, then you won't qualify for a biologic in the UK - whatever the pain bod thinks. And the biologic for PMR would probably raise your BP and your cholesterol - it did mine. I am on Actemra (not in the UK) and I still can't get below 7mg - PMR and GCA have at least 3 underlying causes for the inflammation and Actemra only works on one.

MTX doesn't really replace pred, it is often used in an attempt to lower the dose of pred which it may or may not achieve. For a small number of patients it can be a miracle - but they very likely didnt have PMR in the first place but an inflammatory arthritis where it is first line therapy.

Try low carb to try to get your weight down - which is probably as much to blame for the raised BP as the pred, And some creative use of BP meds may be required - probably out of the average GP scope. I have all the same problems as you but well controlled. Including an ablation for the a/f and a pacemaker. How much you have to cut your carbs varies from person to person - I have to get pretty low to lose weight, almost keto level. But I lost 35lbs on pred at 10-15mg/day.

[Hurner]

I have been taking pred for some 7.5 years, last year I started methotrexate to use as a steroid sparing dose, it did help me to reduce down some 6 milligrams of Pred per day, so yes it can work.

But after approx 6 months I had to stop taking the methotrexate. Side effects in my case was fainting early in the mornings, low blood pressure. As soon as I stopped methotrexate, after approx 7 days, I stopped fainting!

The doctor will give you regular blood tests to check on your liver/blood and other organs to make sure that you can tolerate methotrexate. All my test results

We’re good so no problems there, It just made me faint between 8 and 9 in the morning, not everyday but about 2x per week.

I am now on 8.5 milligrams of Pred and very slowly reducing by 1milligram per month, so so good.

[Jomaur in reply to Hurner]

Can certainly understand why you stopped. I wasn’t actually fainting but came very close to it quite a lot. I was seeing a private cardiologist at the time for my Atrial Fibrillation and Blood Pressure and he didn’t really take any notice when I told him,on more than one occasion. It was only when I went to an out of hours GP because I’d been in AF for nearly a day that they discovered my heart rate dropped extremely low. I was kept in hospital and 2 days later had a Pacemaker fitted. I have monthly blood tests arranged by my GP and providing I feel well and ESR levels aren’t increasing taper 1mg monthly as well. Currently on 9 mg down to 8mg tomorrow.