Recent PMR diagnosis

[Megams]

Have supersensitive gut with long standing gastro-intestinal issues. Stopped Predn. after 4 days of 5mg x2 daily. Now prx'd Hydrocortisone 5mg x 2 3 times daily - shocking side effects, gut worse. Take large range probiotics, has anyone experienced this?

[piglette]

How miserable for you. Did the original 10mg help you with the PMR pain? Was your original pred the coated variety which does give gastro intestinal protection? Were you given anything with the pred such as a PPI to stop any gastro intestinal problems?

[Megams in reply to piglette]

After 2 days on Predn 10mg, I couldn't believe I felt so normal with my mobility and no pain. I can't be sure if the predn was coated, I certainly know they tasted very bitter going down and appeared easily dissolvable, powdery like on my tongue so sounds that they weren't. I am back to Rheumy tomorrow and will ask about a PPI. Unfortunately I have not had great success with side effects with most medications over the years, had a Norovirus 12 months ago and believe my gut has deteriorated since then. Invested $700NZ for 3 months supply of a very special Probiotic - on my 3rd day with this so lets see.

Many thanks for your support appreciated as I have lost confidence very much.

[Celtic PMRGCAuk volunteer]

Megams, were you prescribed the usual PPI (Proton Pump Inhibitor) such as Omeprazole or Lansoprazole alongside the steroids? These caused horrid side effects to my bowel and stomach and were quickly stopped by my rheumy. Instead, I found that a daily 'live' yoghurt with my breakfast before taking the steroids protected my stomach throughout my years on Pred. I did have enteric coated Pred throughout. I'm wondering, like Piglette, whether you may have been prescribed the uncoated variety which may have aggravated your gut?

[Megams]

Hi there, no I wasn't prx'd the usual PPI alongside the steroids? It sounds highly likely that I was taking the uncoated variety. This is where I lose a little faith in my Rheum Spec as I told him previously my gut/intestinal issues. Sadly each time the gut becomes irritated and inflamed so does my arthritis discomfort in my fingers & toes. I take a range of probiotic's too along with an expensive new strain I recently purchased as I was feeling desperate.

[PMRpro Ambassador in reply to Megams]

Do I gather you are in New Zealand? Looking on a NZ drugs list I can't see enteric coated pred listed - it is possible it isn't available. It isn't here in Italy where I live.

If you have severe gut issues you should really be taking a PPI or ranitidine along with your pred - you can get ranitidine as Zantac OTC in most of the world so you could try that. You should also take the pred in the middle of a meal - eat half your meal, take the pred and then finish the meal, so that the pred isn't irritating an empty gut and is well "wrapped up".

My husband also has a "post viral IBS" and his gut is also rather delicate! The specialist here told him to take fancy probiotics plus some stuff called Diosmectal - diosmectite (that here comes from Sicily apparently) when it is particularly bad. He's just had hand surgery and they gave him a PPI which has triggered it a bit - so maybe be careful with a PPI, just in case.

Here's a link that describes it:

wisegeek.com/what-is-diosme...

If you aren't already under one I think a consultation with a gastroenterologist might be an idea. Diosmectite is available OTC in many countries - although not available at all in the UK and the US it seems. However - a bit of teamwork may help the situation because your reaction to 10mg pred would seem to confirm PMR and unfortunately there is no real alternative to pred for treating it.

[Megams in reply to PMRpro]

Hi - yes I live in NZ and discovered today that Pred not enteric coated, nor the Hydrocort.

Thank u for the tip re taking medication half way thru so well wrapped up - like that idea immensely and will consider that with my Synthyroid meds as I take that after I finish breakfast.

I too have IBS and have managed this well for years when first diagnosed - stress can set if off, plus certain foods. Sorted the foods where possible and follow simple macrobiotic diet, no gluten. What a huge difference to my health.

I am most interested in this fancy probiotic Diosmectal you mention - thank u so much for this lead. I will look into this further.

I paid handsomely for a supercharged probiotic last week - Bravo Probiotic. I have purchased 3 months worth and told to be patient before seeing results.

I have been consulting a Gastroenterologist since 1992. Sadly he has retired but was thorough and diagnosed IBS, delay in gastric emptying, enzymes' deficiency and sensitivity to wheat. He initially thought I may have Coeliac disease - fortunately no.

I have a new Gastroenterologist with whom I have not seen in 2 years - have appointment next week.

When my gut is inflamed I mix up slippery elm which is comforting and soothing - can only use this 4 hours away from other meds as interference with absorption. I also take 20 billion Lactobacillus planatarum (299 V) organisms - muted to be used in Europe successfully for IBS.

Both these products help tremendously and should I have diarrhoea my probiotic of choice is Gastro Relief containing 5 billion Lactobacillus rhamnosus (GG) and 5 billion Saccharomyces cerevisiae (bouldardi) organisms.

Have seen Rheum. Spec today and hoping to find a helpful chemist to supply me with a daily 5mg subcut Methyl....................? name I haven't researched nor written down off script as wanted to get into chemist as quickly as possible. The idea being that I will insert this before I sleep at night.

My Rheum Spec. is willing to support me in trying this method - I can't see why it can't work.

Will keep you posted - thank u again very much.

[PMRpro Ambassador in reply to Megams]

Diosmectal isn't a probiotic - it is a mix of aluminium salts, magnesium and silicon and binds the water and is thought to tame inflammation too - this is quite a good description of it.

wisegeek.com/what-is-diosme...

It's certainly worked for my husband and he combines it with probiotics too.

Will 5mg sc methyl prednisolone (is that what he's given you?) be enough for the PMR? Methyl pred is the form used for injections.

But you know - coeliac disease isn't that bad these days. The advantage it has over IBS is that leaving out gluten-containing grains cures it - IBS isn't anything like so convenient! The range of foods that are gluten-free is amazing - one of the largest manufacturers is about 70 miles from me. There are very large numbers of coeliacs in northern Italy and there are restaurants all over the place who cater too! I am allergic to something in wheat - not the gluten, something else in the grain of the highly commercialised stuff. I can eat rye, spelt and kamut (both ancient wheat varieties) - and even French bread which is made with soft wheat not durum wheat! I discovered the last bit while there was no other option for a week in France (on a canal boat, no shops!) and then a couple of weeks ago found an article that said this was not uncommon! Great - looking forward to a week in France and pains au raisin!

[Megams in reply to PMRpro]

Hi there once more - great to receive your reply with all the interesting information - thank you for putting me right on the diosmectal which of course is not a probiotic.

Have been most unwell last three days, my sleep has been dreadful again and the need is even greater for me to be back on to prednisone in some shape or form asap. I feel the heat in my shoulder joints, hip joints and touch of carpel tunnel at days end.

The plan for sub cut methyl prednisolone no longer as option as my regular pharmacy does not have licence to make up solution - needs to be in sterile environment.

Furthermore I am away overseas in June which added further complications to this product which has a shelf life of 2 days only and needs to be refrigerated. Carrying needles through Customs would have placed extra stress on me and I decided this would just be too much even though the theory seemed workable at the time.

As of today my Rheum. Spec. working with local pharmaceutical company on a transdermal patch which I am quietly excited about in every way imaginable. This gives me so much hope and has lifted my spirits no end - will keep you posted.

Consulted with Gastroenterologist late today who wants me to have an urgent gastroscopy.

He has px'd Ranitidine 300mg and wants me to start taking this with my uncoated Prednisone which I will start in the morning.

My Rheum. Spec told me this evening that he is not a fan of PPI's. I will ask him for his reasoning next consult.

Anyway hopefully it won't be long before the pharmaceutical company can have my order completed.

Don't think I mentioned that I had a Noro virus 12 months ago and believe my immunity plus my gut suffered greatly from this dreadful debilitating illness. My husband caught this initially and whilst I was nursing him never thought for one moment I was a sitting duck. Thought it was something he had eaten which indeed it was which sounds confusing.

Anyway a week in France sounds absolutely fabulous, French bread and all.

Best regards

[PMRpro Ambassador in reply to Megams]

You did mention the noro- which was why I mentioned the post-viral IBS!

Oooh - a good rheumy by the sound of things! He may dislike PPIs because they on their own can cause osteoporosis, just adding to the risk of pred and osteoporosis. In fact - if that is his objection do ask him if he thinks that some of the pred osteoporosis story could actually be associated with the use of PPIs.

I think my granddaughter was on a depot form of medrol for her asthma - it did work well for the asthma, the side effects for a 14 year old were a bit horrendous. so they stopped it. Then they had the bright idea of putting her on adult doses - she is now 15 and taller and more solid than her mother who would be given adult doses. Nome had been on the same doses of one drug since she was 6 and since 10 for another. That seems to be helping somewhat as well.

PS - where are you off to? Anywhere nice?

[Megams in reply to PMRpro]

Hi there once more

Have had ups and downs since we last communicated.

Transdermal patch did not come to fruition due to issues where the patch would be adhered and skin thinning process associated to it. Understandable indeed and don't want to create extra unnecessary issues if their were other possible options.

With a lot of research by Pharmaceutical Compounding NZ and my Rheum. Spec. they obtained acid resistant capsules from Australia and made up thus: Hydrocortisone 15mg (containing Methocel E4M) the idea being that they are slow release over 12 hours and break down in my bowel. So far so good I am most pleased to report. Not cheap but I am grateful for any medication that will enhance my quality of life rather than detract under the PMR circumstances.

Gastroscopy revealed mild erosions along stomach wall.

Started PPI, side effects dreadful, nausea, dizziness, headache, I stopped them immediately and have pushed on with regular small amounts of Slippery Elm, always 4 hours away from morning Synthyroid. I am winning with vast improvements.

At the same time last week my adorable loving cat in which I had been nursing for some time died - this set me back emotionally and of course physically, I have been drained, flat and weepy - all understandable with the grief process.

To move on with life once more, I have adopted another gorgeous fluffy purring delight which is an excellent tonic for me.

Three general questions: have you and other's found sleep shocking? If so what do you and others do? I do take a short acting hypnotic, Imovane which gets me off and wide awake after 4 or 5 hours. I understand if you are not so active during the day, little or limited sleep may be possible, but I am reasonably active and I long for a sound nights sleep. Maybe this is unreasonable of me.

Secondly have you or any others broken out in red raised and/or flat lesions since being on the steroid regime? I have had a variety of precancerous lesions removed using liquid nitrogen. Have developed another 2 I have noted and if they remain longer than 4 weeks off I set for another blast of liquid nitrogen.

Thirdly, they say you put on weight - I have had very little appetite or desire to eat at times. Why is this associated with PMR, would love to know. I have always maintained a regular weight and have lost half a stone without trying.

We are not travelling anywhere exciting - a business conference to Fiji in June where it will be far warmer than here by then.

Take good care until next time.

Warm regards

[PMRpro Ambassador in reply to Megams]

Well I suppose to you Fiji isn't very exciting! I'd take a conference there any time! I get to go to China this year - and sunny Chicago next year. I quite like Chicago but it will be the third time! It isn't THAT exciting.

I have keratoses since being on one form of pred but they are pale and are slowly going away. Many people develop "blood blisters" and that is mostly just delicate capillaries it is felt.

The loss of appetite is less usual than ravenous hunger on pred - but I lost my appetite on pred, so does my daughter. The other aspect of the weight loss with the PMR itself is probably the increased level of inflammation in the body and many people run a slight fever. Everyone is different.

Sleep - many people struggle on higher doses of pred. Yet others feel very sleepy when on pred. A few people have said they've used sleeping pills but most accept it, some become quite night owls, and try to rest when they can. It usually improves as the dose falls. I've never had trouble sleeping - I did with the PMR pre-pred though. The pain and stiffness would start at about 4.30 and wake me early. It is said the cytokines that cause the inflammation are shed in the body at about that time - and I'd say that could well have been what woke me!

[Megams in reply to PMRpro]

I was in Rarotonga holidaying some 10 years ago when I was came down with a viral pneumonia - an airborne viral nasty was in circulation at this time and without going into it the WHO were involved with the mystery causes - we were unaware of this prior to booking our holiday otherwise would never have gone. Hospital 3rd world and told the Dr there not to prx. Amoxil as complete waste of valuable time. Having a history of respiratory issues and knowing what antibiotic worked made no difference to him. Deteriorating further and at a pace, saw a Dr next day in private practice who instantly recognised the seriousness of my condition gave me shots, one of Gentamycin and another name I don't recall for the moment, to help me breathe. Only breathing one lung by this stage and had visions of returning home in a box - after this experience I prefer not to travel to little countries such as this simply for their lack of medical care facilities - I owed my life to the astute Dr in private practice.

Does the travel, time change, differing of food, environment, etc OK for you? Especially to places like China?

Thanks for the other insights on sleep,(love to feel sleepy on the Hydrocort. but no suck luck), appetite and raised/flat blood vessels plus keratoses.

The blood vessels interesting too, as one was size of my thumb nail under bra line, others dotted on my back were flat.

Still having weekly IV Vitc/b which still helps me tremendously.

and bought copy of Dr Amy Myers, M.D. "The Autoimmune Solution". Can't wait to read uninterrupted.

Take good care in the meantime.

[PMRpro Ambassador in reply to Megams]

I've been to South Korea and Japan with PMR - food wasn't a problem. The China trip is with a German travel group followed by an international congress - I doubt it will be a problem. Have also been to Oz and the time shifts weren't a problem either.

[Celtic PMRGCAuk volunteer]

Megams, the enteric coated Prednisolone is available in doses of 5mg (red coated) and 2.5mg (brown coated), and I'm very surprised if, with your history of gastric problems, you haven't been prescribed these. If that is the case and you are taking the all-white pills, then ask your GP to prescribe enteric-coated. Do try the 'live' yoghurt. You can also try a few squeezes of lemon juice in warm water before eating - it turns alkaline in the body so can help the gastric issue. Another remedy is Manuka honey with a guaranteed quality of UMF 10+ or 15+, expensive but has a whole range of benefits.

[Megams]

Hi there Celtic - thank u very much, appreciate your kindness.

I do use the Manuka honey with UMF 15+ from time to time and know how important it is to buy from a reputable source. I will try lemon juice in warm water before eating when I wash down my usual evening digestive enzyme (prx'd).

I do squeeze lemon onto my dinner most nights (when I remember) and always a large dollop of plain unsweetened organic yoghurt containing L. acidophilus, B. bifidus & L casei.

Learnt today we do not have enteric coated Prednisolone nor the Hydrocort. I tried. For those with gastric issues such as myself, I feel very much as it detracts further from our quality of life when we are trying so desperately to get well and stay as well as possible.

Asked the Rheum. Spec. today if we would organize a subcut delivery system which completely bypasses stomach and he was most obliging with this.

Now got to find a Chemist who is willing to help me make up a delivery system of 5mg Methyl-................... didn't write down the name sorry but you may know the name and I need to google it.

Will keep you posted and will know more on Monday as it is Friday evening in NZ now.

[Megams]

Well that is excellent, you sound a born survivor which is fantastic.

Regards once more