It's back what supplements are ok?

[BirmLiz]

Hi all,

Budge up everyone, I need a place at the PMR table again. My last Pred was taken in December 2016 or so I thought. My osteo arthiritis flared a couple of weeks ago but after three days of Flarin it didn't calm down. I noticed after a while a few familiar shoulder twinges and booked a telephone appointment with my GP. I was amazed to find he seemed to know all about PMR and suggested they treat me to save me the 22 weeks wait for the Hospital Rheumatologist. My blood test is tomorrow and he'll ring me on Thursday with results and suggestions. Being on the cynical side, my Big Girl Pants are out of the wardrobe ready to be put on and I'm waiting for the first time I have to stand up and say 'No thank you' politely.

One question I'd like to ask is what supplements can I safely have whilst on Pred? I'm taking cod liver oil, multi vitamins and minerals and hemp oil at the moment which I wasn't last time. As this time I'll be on Omeprazole as well as the Pred and AdCal I realise this is a different chemical mix from last time so in this respect I'm a newbie.

Am trying to fight the glums that attack in the morning when I struggle out of bed so am relying on singing (I have very understanding neighbours luckily) and comedy videos on YouTube. Let's all have a laugh if we can after what we've been through the last couple of years and being vulnerable to this beast of a condition!

Best wishes to all,

Lizzie

xx

[HeronNS]

Why the Omeprazole?

[BirmLiz in reply to HeronNS]

Hi there, the GP gave me a run down of how they treat PMR and he said something would be prescribed to protect the stomach as sometimes people had side effects such as ulcers from Pred. I just assumed it would be along the lines of Omeprazole. It's something I didn't have last time from the Rheumatologist - just pred and AdCal.

[HeronNS in reply to BirmLiz]

A lot of us get prescribed this drug. If you have no stomach issues, and are on a PMR dose (not a GCA dose) you can probably manage as you did last time. I always have my pred just with food.

The problem with PPIs is that they are not supposed to be taken longterm, although a lot of doctors ignore that fact. Plus they can affect bone density because you aren't absorbing nutrients as well.

Not telling you not to take it. Some people do need something. But as well to read up on it and decide after you know more.

[BirmLiz in reply to HeronNS]

Hi my fatigue hit and I struggled to bed so sorry for late reply. Last time around I was in the reducing stage and had a sharp pain at the top of my stomach one night which developed into a dull, persistant pain. Told the hospital when I had my bloods done and they fetched sister. She said it was a stomach bug??!! I reduced the Pred that week and everything returned to normal but funnily enough they called me back for a scan of the upper abdomen because I was anemic. Never told what they thought it was but I have my suspicions. Perhaps if my GP is as good as he seems I may grill him about it but it seems to need more discussion. Thanks for the heads up x

[HeronNS in reply to BirmLiz]

Yes, that does warrant a discussion, and probably you should be taking something more than our recommended yoghurt or meal at least until your dose is really low again.

[HeronNS]

Oh, and welcome back. So sorry, but it's a great community as I think you know.

[BirmLiz in reply to HeronNS]

No one wants to come back but the big compensation is talking to the fellow sufferers.Take care x

[MrsNails]

Hi Liz - l have a link to NICE for drug interactions which is very useful which is worth a look through.

bnf.nice.org.uk/interaction...

Sorry to hear that its back!

All The Best

MrsN

Since you were here last we have devised an FAQ’s Post which has loads of information in it so it’s worth saving it to Saved Posts & you can have a browse when you have time.

healthunlocked.com/pmrgcauk...

[BirmLiz in reply to MrsNails]

Thank you in advance for all the support I know you are all going to be. I used to jump on occasionally answering questions about non medical things if I thought I could raise a laugh or be of help with exercise regimes etc. You're all worth your weight in gold. Happy Monday all! x

[SheffieldJane]

Hello Lizzie and welcome, sorry it’s relapsed. You seem determined to support your system. K2 would be a good addition, it helps us to absorb the calcium. Remember to have a low carb diet because of the voracious appetite and rapid weight gain. You may find that this PMR experience is a bit different. Let’s hope it is shorter. I love your approach to the glums, I found Fleabag helpful and poignant- also really rude, but it made me laugh before bed. What does the hemp oil bring to the party? Best wishes Jane x

[BirmLiz in reply to SheffieldJane]

Thank you Jane. Bit of a blow but it is what it is as they say. I'm hoping that I have found a GP who is able to support rather than over ride. He told me that there were only 2 doctors available, 2 vacancies for partners and 1 was off with covid. It becamea bit of a mutual support chat in the end! I'm just glad we still have an NHS left and to be able to speak to someone (even just on the phone) the same day was wonderful. Before this really started I was trying to keep the old knees going so hemp oil is sometimes reckoned as a bit of pain relief but you don't 'trip out man' as they take the hallucinogenic properties out.

Funnily enough I was planning to see if I could get onto the list for knee replacement and was trying a revised Michael Moseley diet so if it's a long wait I would be the right weight (pun intended). Looking forward to being scolded by younger friends for having the wrinkles plumped out by Pred!

Take care x

[PMRpro Ambassador]

Welcome back - even if for all the wrong reasons! You seem to be regarding this with equanimity! Most people I know who have had it more than once say they found the episodes very different - but also that the second was easier in some ways because they had a better idea what was happening.

Your GP sounds like a find - since you have had it before AND we are here you probably won't need too much input from them except no fighting about the dose you need and prescriptions.

I have never taken a PPI, I do use famotidine when I need to take ibuprofen on a regular basis for an associated problem but otherwise have survived 12+ years of pred without problems. But it sounds as if you MIGHT have had a warning - and how clever of that nurse to be able to diagnose without any tests ...

[BirmLiz in reply to PMRpro]

Thank you for your welcome. I find that it lifts my spirits if I'm trying to be a brave girl (? yes in my head I'm still 18) for others. The glums are a real problem that I don't think many health professionals take into account but then again I don't want to be offered more drugs to make me happy. I was really scared the first time around because I couldn't find anything online to match the symptoms except for a few that were attached to MS. Add that to a wait of 17 weeks to see a Rheumy - good job my mobile hairdresser diagnosed me as her husband had PMR!It seems to be creeping on slowly this time but the real pain (in every sense) is the osteo arthiritis in both knees. Last time the Pred helped with that too so another thing to discuss with my GP - get me on the knee replacement list please (I may be off Pred by the time my name comes up!).

Yes the sister was wonderful with her psychic ways - should have asked her for the lottery numbers whilst I was there!

Trudging along but heading determindly onwards and upwards again, take care x

[PMRpro Ambassador in reply to BirmLiz]

Depressive mood is actually a part of PMR - and managing the PMR well is the best solution. Then of course there is the bereavement aspect - the loss of "you" - so if you can access it, talking therapy may be helpful but if not - there is always us!!! Not least because we "get" it better than most. And happy pills? Only for certain things I think ...

If you haven't already done so, reading the FAQs will provide some leisure reading for a while and probably answer a lot of questions you didn't know you have. But there is someone around to listen probably 24/7 - international population and quite a few night owls.

I've grown up a bit - I admit to being 30 in my mind. Shame the body doesn't agree!