Got to Zero but now feel dreadful

I am neither condoning the use of prescription medication over supplements or the other way around but... to be the devils advocate wouldn't you as a pharmacist think that prescription medication is safer than supplements because prescription medication has been tested and is monitored by the FDA or other agencies in other countries? I know in the US there is little to no supervision of supplements. Thereby actually making it seem safer to take a prescription medication over a supplement. Just saying.

Dear Amkoffee, I am not recommending supplements over prescriptions- I was referring to my experience only and because my Doctor, rheumatologist monitors my condition, my labs and symptoms I have not been put back on prednisone even though I felt worse when I got to zero- I limped back to the doctor feeling worse than I had ever felt and was so depressed because I thought I was getting better and I felt worse. Some of my symptoms could have been due to the "coming off prednisone" and due to the disease state itself. I was and still advocate positive relationship with your physician and the supplements that I take were actually suggested by my specialist and my primary doctor who is an integrative doctor. Along with my doctor's recommendations about supplements were to get my GUT in check which many articles talk about the microbiome and gut a main function of the immunity issue. I was not recommending supplements over prescriptions at all. If the doctor does not feel that prednisone is to be started again these were the alternatives that made me feel better. Unfortunately this disease is so elusive and prednisone is our only hope and if that is what needs to be taken to save your life that is the treatment. And yes  FDA does not test supplements or deal with until a side effect or adverse event is reported. That doesn't make any sense to me and I tell my patients that they need to know the origin of the products they are buying and I only use products that have the "USP standardized" label.

I am not supporting use of supplements over prescriptions and especially not recommending to do anything without the direction of someone's physician. I hope that clarifies what I was attempting to offer- my experience

 

Hi Linda

Thanks for the reply. I have to admit I was prescribed Vit D and Calcium but had difficulty taking the tablets as I had to have an interval with the Pred and eating. We always seem to eat broccoli, rhurbard and spinach or whole grains so never got to take it! My Vit d levels and Dexa scan results were than I had really strong bones, so I just ate lots of cheese and yoghurt.

I have the exact same problem and lifting my arms to get undressed. I have started to think about what I wear so I do not have to struggle.

With regard to your itching, I had this twice and it is truly awful. Once was when I was at the end of my pregnancy and it was a liver problem so you might want to get that checked at your next blood tests. The other time was when I got infected with scabies,. I literally scratched myself in my sleep until I bled. The GP prescribed some ointment that had to cover me had to toe and then washed off the next day. And then it was wash or burn any clothing! I make sure I never go back to the house that infected me! Hope you are feeling better soon.

Jane,

Thank you- my labs are good and not liver, thank  God, I know it is not scabies, again how awful for you. When patients would come to the pharmacy with their scabies prescription I would start itching just because....

I have purchased a  number of bras that are front closures and minimized my over the head routine as best as possible. Mentally it is so depressing to have such difficulty in doing such a simple task.

Your comment about the your liver and pregnancy and the outbreak is not surprising as the hormonal effect during pregnancy is a huge component just as is the hormonal imbalance during menopause. There are alot of "connect the dots" I believe but the science has not caught up with the disease process yet.

Thank you for your reply- the support to be able to discuss with all is a huge positive in the healing process so we do not feel isolated an alone- Thank you

Good to hear that Linda! I had to start shopping at Bravissimo as I have put two stone since starting Pred. I am now a very voluptuous 34FF, so need a strong supportive bra. I have difficulty fastening my bra and have to sit down to get my knickers on. I am too stiff to be able to stand up! 

My GP was hilarious, what about trying some Physio? Ahh yes I have seen her for 46 sessions now, once a  week if not good, fortnightly if ok and three weekly when things were really good. I am the physio’s longest serving patient!!! I have not bother to explain to the GP my difficulties with my underwear. 

Hum - if you are that stiff I'd suggest you are not enough pred. 

Weight gain with pred can be dealt with by cutting carbs drastically - I lost 35+lbs while still on between 10 and 15mg by doing so. Pred changes the way your body metabolises carbs and also triggers the liver to release spikes of glucose. Which all makes for greater amounts of insulin which is what leads to fat being deposited in the usual places. Cut carbs - reduces the problem and you should lose weight. It also helps avoid developing pred-induced diabetes.

Oh Eileen, the bit about the usual places made me smile. Thanfully, I have now lost almost 2 stone but the fat hasn't just been deposited in the usual places. It's in place it's never been before and it looks like somebody has taken very large pieces of plasticine and rolled them in a ball and stuck them on at random!! There are still 'odd' deposits.

Eileen thank you so much for your wisdom. The GP felt that I ought to get off steroids within 2 years, so he does not want to give me any more! I have had s search of my tablets and found I have some sort n date 5mg pres. I think I need to try these. I am so exhausted I have difficulty trying to get my shirt over my head at bedtime!

What do think about Linda’s idea of Vit D. I was prescribed adcal so calcium and vit D but didn’t take it as I could never get the interval right with eating and steroids. 

I have some left, so would it be worth trying them?

How long would you suggest I try 5mg for? A month and then start reducing using DSNS? Or wait until I feel ok and then wait a month and then reduce? 

Thanks for your help. My GP has learnt so much about PMR from you, but I am the only patient he has seen who is so young!

Thanks and regards

Jane

I'd try it for a few days, if it doesn't work try a bit more. Then - if it helps you probably have an answer and you can approach your GP. You must have more than one GP in the practice - if one doesn't bite, try another. That was the mistake I made at the age of 51 when mine started. Had I seen one of the women (who was part time and semi-permanently on maty leave) life would have been so much easier. But you do need to have a source of pred available.

A course of decent level vit D won't do any harm - but I wouldn't do both at the same time. Do the pred first. If that doesn't work, try the vit D at a fairly high dose for a few weeks. If it is vit D, I doubt pred will help. Naughty, naughty - you do need vit D and calcium and it isn't that difficult! Pred for breakfast, calcium for lunch and tea/dinner... But it doesn't HAVE to be a meal - as long as there is a bit of fat around that is fine, a piece of cheese, a buttered biscuit/cracker, even a cup of tea/coffee with proper milk is enough - no skim milk, that is just coloured water!

Look on this post:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and read the article about steroids "Polymyalgia Rheumatica and Steroid Side Effects: New Findings". They found that the median time pred is needed in PMR is 6 years. Show the GP - and tell him that fits with what we see on the forums and in the support groups. 

Thanks Eileen I will have a go with the Pred.

I read the Pratical Pain Management article a few months ago when it first came out and found it very interesting. Although it does some a bit like a 1970s self help manual! Remember the Haines manuals of Pratical Car Maintenance. 

Thanks again!

All he answers I needed and on a Sunday too!

Jane 

I am on 25mg of pred. I take 20 on the morning and 5 in the evening along with 500mg metform, 40mg zocor, 20mg celexa, and 5000iuD3. Guess it's ok to take these all together in the evening?

Wow, I think you should check with your pharmacist, if you haven't already!  i only take one prescription med, the pred, everything else is vitamins and minerals....

Wow x 2. These drugs all for PMR? If so something seems terribly wrong. Basically, the only thing that we know that works to ease pain is prednisone. Everything else...

I was on this before pmr. Metformin for type 2 diabetes, zocor for cholesterol, celexa for anxiety, and the vitamin D for deficiency .

How did the onset of the PMR relate to you being started on zocor (simvastatin)? PMR is llisted as a side effect of simvastatin!

You were already on celexa before the PMR - but how long before other pMR symptoms appeared? PMR itself, like many autoimmune disorders, leads to depressed mood and anxiety.

And you were already on metformin before pred - cutting carbs will help control pred-induced diabetes. One lady got her Hba1c down from 47 to 41 just by cutting carbs.

How long have you been on 5000 IU vit D? Is that daily? If so, that is 35,000 IU per week and shouldn't be taken indefinitely without the blood vit D level being checked. You would usually need that for about 4 months to get a deficient level up to normal range.

On metformin for approx 5 yrs lowest dose and a1c is always within range. Pred so far has not increased my readings. Simvasratin for approx same length of time and lab rests have been good. Celexa for about 1 yr. Vitamin D for about 6 months and bloodwork to to check this in about a month

All sounds fine and logical. Only other question - did your GP suggest stopping the simvastatin to see if it was contributing to the PMR pain? It does happen. 

Can't see why you shouldn't take them altogether - but a pharmacist is the person to ask. If you were in hospital they'd just chuck everything at you at once!!

Haven't been to GP since diagnosis from rhumy. Will see her in a couple months. Don't know how much she is up on PMR