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[Blues1]

I am 61 and was diagnosed with PMR 3 months ago after changing my GP. I now realise I have suffered with this for at least 5 years . My previous GP put symptoms down to lower back pain , shoulder problems rotator cuff, and referred me for physio a few times . Tiredness I had always put down to stress as I have been supporting our very elderly parents for 10 years and lost my father to Alzheimer's last year. I now am on Prednisolone 30 mg which has relieved the pain but am having stomach pains and abdominal bloating and puffy face . I want to reduce down and GP has given me a reduction plan. I feel ill a lot of the time but it's hard to decide how much of my symptoms are s stress and grief related and how much is the PMR.

[Hidden]

Good Morning Blues, Welcome 🌷

How long have you been taking the Prednisolone & has your GP given you any Medication to protect your stomach?

It’s difficult when you’ve been suffering for a long time & have had the loss of your father to come to terms with & in truth all these things are in the mix.

30mg is quite high for PMR but maybe you GP wanted to hit it hard. Have you started reducing yet? Plus you definitely need something to protect your stomach.

I’m afraid the puffy face is due to the Pred but will improve as you reduce the dose.

I think another trip to the GP is in order to discuss how you are feeling.

Others will be along shortly with some tips/advice & forward you some links to read.

Once again Welcome 🌷

Kind Regards

MrsNails

[Blues1 in reply to Hidden]

Thank you MrsNails I've been on Prednisolone 7 weeks dropping to 25 mg now with fortnightly stages following GP advice. Got Omeprazole but find Gavescon more effective. Yes GP said he wanted to hit hard as I was feeling so ill. Stairs are now easier, back pain gone, shoulders still bit achy and stiff. Energy levels still very low. Blood test couple of weeks back show inflammation levels have reduced. Will see doctor again in a couple of weeks.

[Hidden in reply to Blues1]

To be honest l think you’ve had a lot to come to terms with & as you say it’s hard to figure out what’s going on.

First l recommend you rest, if the pain is improving you will start to feel as if you should be doing more but the Pred is only masking the symptoms, it’s still rumbling on in the background.

You have the grief of your father’s loss but you did everything you could for him & now it’s time to concentrate on you.

Try some plain yogurt after you take your Meds in a morning, a lot of us do on here.

You’ll get many more replies as the day goes on so you’ll feel as if your amongst friends.

Take Care

MrsN 🌷

[Hidden]

Hi blues1, that's a tough few years. I am glad you are getting pain relief from the pred. Are the pills coated (coloured) or uncoated (white). If white they may be causing some of your tummy pain. Is there any other medication you have stopped or started recently? There may be some issues with medicine effecting your digestive system that aren't being helped by stress and grief. Your hormones will be all over.

Puffy face is most likely pred but it definitely reduces. You can give up salt to see if that helps and eat fewer processed carbs. It helps manage the spikes in your blood sugar pred causes.

The reduction plan isn't super fast is it? Usually from 30 to 15 can be managed in 2.5mg to 5mg drops....see what happens a week or two before you drop to ensure no symptoms. It's recommended that taper no faster than 1mg per month thereafter IF no pain or stiffness returning.

This is not going to be a quick fix but hopefully once things settle it'll be worth it after 5 years of suffering.

[Blues1 in reply to Hidden]

I'm also on lisinoprole and propranolol for high blood pressure

[Hidden in reply to Blues1]

Have you changed your routine with propranolol? If you have been taking it with food then start taking it on an empty stomach or vice versa it can cause tummy issues. It can make you feel unwell apparently. I take linisopril with pred without any problems.

If you haven't got coated/gastric resistant prednisolone then it's worth asking for it. I have come off lanzaprozole by using coated. As you go down in dose it's good to have a supply of uncoated 1mg pills as they can be cut in half with a pill cutter. You may need to drop by 0.5mg sometimes.

Please ask any questions you need to. There's usually someone around pretty much 24hrs a day.

[YuliK]

Blues Hello there

Well you have arrived to the right forum to receive positive answers to your dilemma.

Puffy face and bloating is one of the most common symptoms of taking Prednisone..

It is known that PMR is an autoimmune disease and something in our body makeup triggers it. Most of us have put it down to stress...

Your gp or rheumatologist should have recommended that you take a medication to protect your stomach , which would avoid those tummy pains which you say you're experiencing.

It's recommended to take the prednisone after meals, but many of us take ours at night with yogurt or a banana.

Tapering down must be done very slowly and I'm sure one of our helpful lady mods will post you what is recommended.

You will most likely feel very tired, but that is also a side effect of prednisone. It does get better as you slowly reduce. It took me over 15 months to reduce to 6 mg.

Feel well, and know we are all here to help you pass this pmr.

YuliK 🌹

[Soraya_PMR]

Welcome to the forum Blues1 , hopefully being part of this community will help you feel less ‘blue’.

I too was finally diagnosed a year after a parent died. I’d cared for her and that is a stressful occupation, which definitely feeds PMR. Are you still caring for Mum? If so you should treat yourself as ‘employed’ in regards to pred, and may well need rather higher doses to get through.

Yeah! My GP similarly wanted to pass this off as a back problem or hip arthritis. I told him to prove it, so X-rays of hips.....proved him wrong. My back is well known to me, so when he tried telling me this was also due to my L4-5-S1 disc prolapses, I asked him how that possibly affected my shoulders? No answer to that muddle of anatomy/physiology.

Ah well, it is what it is, and here we are. You’re on pred now, so you’re on the up 😊

Did you start the omeprazole alongside the pred? If so stop taking it. It’s notorious for causing problems. I was given a similar drug, lansoprazole, caused havoc! Just think barrage balloon and you’ll have some idea of the bloated wind I had 😮 If you need something try ranitidine, does the same thing but in a different way and is often better accepted. I use it occasionally alongside gaviscon, but rarely due to pred, which I now have as a coated tablet (gastro resistant). My uncomfortable tummies are now because I’ve eaten too much or taken codeine which sets me off. Ranitidine can be purchased over the counter at 75mg if you want to try.

What else was I going to say? Oh yes, has GP prescribed calcium and vit D3? It may come as one combined tablet. Dr’s don’t prescribe K2, but I advise you to purchase some. D3 helps absorption of calcium, take it with some fats as it’s a fat soluble vitamin, as is K2 which helps direct the calcium to your bones rather than calcifying your arteries. Alendronic Acid is another favourite of doctors, decline it at this stage until you’ve had a dexa scan which proves you need it. Keeping pain free and therefore active is the best thing you can do for your bones, hence take sufficient pred to allow your body to move.

Enough! Don’t want to drown you with info! Come back and ask any questions, there’s always someone here, day and night.

[Soraya_PMR in reply to Soraya_PMR]

One other thing!

You’ve changed GP, make sure new one has you registered as a carer. You may be able to tap into extra services for Mum due to this.

Doc also needs to know if he’s to treat you holistically, and caring does affect things.

[Blues1 in reply to Soraya_PMR]

Yes still suppoRting Mum at a distance she refuses to move and is 40 miles away. This constant traveling backwards and forwards has not helped. Myself and my husband have supported my parents and his mother for many years We lost my dad and mum in law within five weeks of each other last August/September .

[Hidden in reply to Blues1]

🌻

[Hidden]

Ranitidine definitely a good choice.

[Soraya_PMR in reply to Hidden]

Yes an oldie but a goodie. I rarely need it now after coated pred, which works for me as I can take it at bedtime and no stomach problems.

I took an inordinately long time to realise that some of my between shoulder blade pain was actually indigestion. I mean I’d had occasions when the ‘axe in the back’ was clearly associated with my stomach/gall stones/severe indigestion; but I’d put the milder between shoulder blade pain down to a ‘tired back’ or ‘unhappy muscles’ Couple of days of ranitidine....gone!

[Hidden in reply to Soraya_PMR]

Actually now you mention it my pain between shoulder blades improved despite gardening.

[Soraya_PMR in reply to Hidden]

Ah ha! The penny drops! I can’t believe I was so dense about this for so long. I’d even been to the chiro with my ‘tired back’. They didn’t solve it either! Did solve/manage lots of other stuff, but not this.

[Hidden in reply to Soraya_PMR]

I had taken ibuprofen last week so had been given myself a blast of Ranitidine the past week. It is like a penny dropping 😂😂😂

[Soraya_PMR in reply to Hidden]

Oh yes, Brufen the stomach wrecker. That’d do it 🙄

[SnazzyD]

Hello, the rest has been answered. The face does improve! I found I couldn’t tolerate the PPI stomach drugs, tried Ranitidine which was great for 2 weeks and then I got rebound acid. In the end I asked the GP for coated Pred and when she started to say it was more costly I said it wouldn’t because a) I wouldn’t be having the stomach protectors and b) any Gaviscon Advance top up I would buy myself. She gave in and I never looked back and I started on 60mg and then was on 40mg for 6 weeks.

[DorsetLady PMRGCAuk volunteer]

Hi Blues1and welcome,

Good advice been given already, but have a look at this as well -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thanks DL 🌷

[SheffieldJane]

Your story is the perfect storm for PMR. I am sorry that you lost your father in such a cruel way. I had a similar experience (7 years) with my mum prior to diagnosis.

Prednisalone can be very harsh on the stomach. I have always taken mine with live plain yoghurt and a little honey. The Omeprazole that was prescribed made it worse, so I stopped it. The bloating seemed to be linked to carbs and cutting back on them as much as you can will not only help the bloating but also control weight gain. Easier said than done, I know but when I deviate I feel horrible.

When you are sad and low, everything is magnified and feels much worse. I found it useful to talk to a therapist at the time. She gave me strategies to cope that I draw upon still. It really is time to take care of you now. Ensure that you taper Prednisalone gradually, using one of the plans we recommend on here. Stick with us. This forum is a wonderful source of information, support and friendship.

[PMRpro Ambassador]

It may be the omeprazole that is causing the bloating so try using something else.

Cutting processed and white carbs will help you reduce weight gain and often also helps the puffy face. It will improve with time. And the flu/unwell feeling may improve if you get your pacing and resting sorted out - pred just reduces the inflammation, it does nothing to the actual underlying illness.

[Blues1]

Thank you everyone that have responded to my post today, it is reassuring to read comments that I can relate to

[GOOD_GRIEF]

What I haven't seen mentioned is splitting the dose. You don't have to take all the pred at once to for it to be effective. Most people try 1/3 in the evening and 2/3 in the morning. I did half and half, 6am and 10pm, and never dropped pred into my stomach without first putting down a landing pad of something solid - oatmeal, or peanut butter on half a slice of whole wheat or black bread, fruit and cheese, with a big glass of water. The evening dose is usually taken right after dinner. Once I had tapered to 10mg a day, I started cutting the morning dose by 0.5 mg and stayed at the dose for 4-6 weeks before trying another drop. When I got to 7mg, I switched the whole dose to the evening after dinner. I've had very few stomach issues since I started the split dose.

You might also be happier with a pretty bland diet, skipping the garlic and hot sauce and hot spices for a while to see if that helps. Non-fat yogurt helped with the gas and bloating.

I'm down to 6mg now, headed for 5.5mg next week with fingers crossed.

Hope you're feeling better soon. Just so you know, once I get to 10mg the pred face, the pred belly and the buffalo hump started to melt away, and are all gone now. I look like myself again, I feel like myself again, and I lost the 7 pounds I gained in the early days.

We get better. It's slow and it's frustrating, but we get better.

[Blues1 in reply to GOOD_GRIEF]

Yes I've cut out spicy food and use herbs in cooking. That seems to help a bit. I will try splitting the dose thank you. My doc said take them all in the morning after breakfast. I have suffered for years with IBS and sensitive stomach so it might help.

[PMRpro Ambassador in reply to Blues1]

Some doctors will say it shouldn't be done in GCA - I can't see why not since if symptoms are returning within 24 hours it is a sign there is a lack of control of inflammation and in fact a study has found that it doesn't make any difference whether pred is taken all at once or split even in GCA. In PMR it often means people are able to manage on a lower total dose overall.

After all the years on the forums - I don't think the timing is something to be fixed in stone. You have to experiment a bit to find the timing and amount that works best for you and your version of PMR/GCA.