Hi I’m currently taking 15mg daily of prednisolone and although this worked brilliantly for first 3 weeks I am now having more bad days than good preventing me from reducing dosage.
Anyone else have days where symptoms flare regardless of dosage as I can see no patterns
Hi dottychaim.....this is a question that often comes up in the first couple of weeks of steroids.... I just wondered what have you been doing on "good" days? If you have been trying to do your "normal" life activities then that could explain why you were having "bad days". Do you think this applies in your case?
If so, then you need to pace yourself more. The pred just controls the daily inflammation, it doesn't cure PMR.
Without knowing a bit more it is difficult to say more than Poopadoop has already said. The most common reason for this effect is that you go back to normal activity on a good day - and so the next is a bad one. 15mg is also the bottom end of the range for a starting dose and if you were put on pred quickly it may be that the disease activity is increasing over time.
The pred is mopping up the inflammation, it may be that it isn't enough to clear out existing inflammation so the daily dose of new inflammatory substances is too much. The pred does nothing to the actual illlness - it continues chugging along in the background while the pred helps manage the symptoms. You have to do your bit at the start - by starting to change your day-to-day habits and pacing yourself.
So early in the disease treatment makes me wonder if your dose was high enough initially? I started on 20 mgs along with a lot of others. There is the issue of not regarding yourself as cured because you feel better. You still have a significant, systemic disease and need to pace your activities and look after yourself well.
Dear Dotty,
I can only speak for myself b/c we all experience this disease differently. Three years ago, I went directly to a rheumatologist. I had a family history; maternal grandmother had PMR, recovered, and my daughter RA , off all meds, diagnosed shortly after giving birth to a premature infant who is now 14 and fine.
I also had gout in my 30s which disappeared after taking colechine for 5 to 6 years with a couple of intermittent attacks while on medication. So I knew I had a rheumatological problem. Uric Acid levels so high, Dr. repeated test twice. Even now they are on the high side of normal.
Prior to the blood results, the doctor prescribed 16 mg of Medrol. In less than 48 hours , felt wonderful; even chronic pain from osteoarthritis with disk and nerve involvement pain in my spine was gone.
I had no bad days until the first attempts at tapering 6mo. later. I was advised to be sure to remain active, but also to make time to rest and relax awhile each day. I usually lie down , read, or just close my eyes.
So I wonder if you are resting/relaxing and avoiding stress as much as possible. I must admit that even this forum stresses me occssionally.
After awhile, I felt comfortable letting my GP take over. I am now taking my depotmethylprednisisolone by IM injection every 3 weeks at 120mg.+ 3 mg.orally. I have also developed anemia, also common to PMR. Since taking iron supplements for 3 months, I feel better.
Has your blood been checked for anemia? Do you live in a stressful situation? What is a good day for you, and what is a bad day like? Is it possible your thyroid levels, calcium levels, as examples, are out of normal bounds? Or blood sugar too low or too high.? Are you eating well? Sleeping OK? Could you have other health issues, unrelated?.
Have you been comforting yourself with sweets as I have done; very inflammatory. Ice Cream and cookies thrown out. Cravings stopped.
I would think you would be feeling well at this point. Sometimes, anxiety about getting a diagnosis like this can make us feel bad. We cannot separate body and mind.
Think outside the box. You could be having a side effect of Pred, and maybe need it in a different form. Think about what is making you have had days at this early stage.
My wise , now retired Dr. , used to say "Sometimes things get worse before they get better." Just remembering that wisdom makes me feel better.
Best regards and keep us posted.🌻🌻🌻
Sorry to hear that this forum is causing you stress. What exactly is the problem because as moderators we need to lnow if someone has an issue with how the forum is run. YBB
Whatever you do, do not reduce unless you feel OK. PMR will only turn round and bite you. As the others say, have you carried on as you did before? You are ill and you have to respect PMR, you need to rest, rest, rest and learn to pamper yourself. The steroids have not cured you they have just blocked off the pain.
....yes, Pace, pace, pace. I learned that is the most important lesson. I do a little, then rest. Napping is part of my “plan for the day”. Fatigue is my biggest complaint. I say NO a lot. This works for me. I am now on 4 mg., for the month of Oct. Feeling pretty good. Thinking upkeep of a large house and yard is exercise, no need for a gym.
I have really rubbish days, or mornings - seems to improve in the late afternoon. But I can't always rest as my husband has developed Alzheimer's. Finding life stressful and difficult.
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