Almost 8 months still struggling

Hi - I was diagnosed almost 8 months ago with PMR & TA - Preds 40 mgs prescribed, dropped to 30 after 2 weeks then 25 a month later then 20 - had a flare, stress or too fast, back up to 30 etc. now slowly back down to 17.5 but since the flare that made me go back up, I have increasingly felt ill. Intermittent aching, neck, shoulders etc and stiffness (Rheumy not worried as long as head pain does not return). Due to go down to 15 mgs, but so very tired, fatigue a real issue, feeling intermittent nausea with hot sweats through out the day and really bad at night, little sleep, concentration is really poor. Tummy not gooe either.

Should I still feel so poorly - albeit in a different way ??

Thank you for your support, this forum is a godsend!

21 Replies

  • The hot sweats may be pred side effects. Also the insomnia. I get brain fog with pred too. Are you taking coated or uncoated pred? If it is uncoated it may be causing stomach problems, some people take tablets to help this, others just take yogurt. Have you had any blood tests to check your ESR and CRP to see if they are reasonable? I don't think I would reduce when you do not feel good.

  • HI Piglette, uncoated I think they taste bitter! I am still working so that is not helping the fatigue,I dont think. Seeing the doctor Monday so may suggest some bloods, I have not had any taken since diagnosed. Just worried about reducing then going right back up.

    Thanks for your reply!

  • If you need to go up it is usually easier to get back faster to your current dose if you increase for a short time to get things under control again rather than first time round. Do you take vit D and calcium? Also have you had a Dexascan? I have a blood test about every three months now initially it was about every month. I carried on working and found I had to lie back in my super office chair and have a nap every so often.

  • Hi

    I did ask for a dexascan but was told I just needed to take the Risonodrate as I was at 'that' age! Menopausal I guess he meant. The chewable Cal D ones I take - not really possible to have a quite minute at work let alone a nap - stressful place.

  • I think I would push for a Dexascan as it is recommended if you are on steroids for PMR. I was just talking to a friend this evening who had to fight for a scan, she had cancer and steroids and potential osteoporosis. I helped raise money to buy our scanner so felt entitled to one!! I have become much more pushy since PMR as I discovered quite often we are just palmed off unless we make a fuss.

  • Thanks i will try for one - my brother (aged 53) and mother (aged 60) both died of bone cancer - so I am very wary ????

    Thanks Piglette for your advice - it seems to take too much energy to be pushy these days!

  • I know how you feel. Heads they win, tails you lose.

  • They put you on Risedronate without checking that you actually needed it? If you are taking that drug it could be causing some of your symptoms.

  • I am seeing Doctor on Monday - I will see what he cn suggest - thanks HeronNS

  • Hi Lesley,

    Your Rheumy may not be concerned, but he should be! If you still have pains then your inflammation is not under control.

    Suggest you go back to the dose where you were last comfortable, staying on it for a few weeks. Don't consider reducing Pred whilst you are in pain.

    When you do reduce again, try either a smaller reduction, or a slower method.

    You have to initially get the inflammation under control, and then keep it under control as you reduce. It would seem to me that you haven't been able to do that, which is why you have had a flare.

    Unfortunately lots of doctors expect us to follow an unrealistic reduction plan. They prescribe Pred, and then want us off it ASAP. Well, it doesn't work like that!

    You need to go at your own body's pace, and we are all different, so don't try and rush things.

    I started on 80mgs and am now down to 2.5mg but it has taken me nearly four years. 80 down to 20 took about 18 months, so you can see how quick you have reduced. Since then I've gone really slowly so I don't risk a flare.

    Hope this helps.

  • Thanks Dorest Lady, thats what I will do. I just don't want a flare and have to go back up again. So pleased you are back down now to 2.5 - well done ! thanks for your support.

  • I did feel unwell for a lot of the time when I had PMR, very tired, dizzy, nausea, sweats, lack of motivation etc.... The steroids took the pain away but I never knew if it was the PMR or the steroids causing me to feel unwell. I reduced steroids using the very slow method - it took me about 2.5 years to get off them with several hiccups along the way (I had PMR for 6 months before diagnosis and treatment). Try and eat healthily, include lots of anti inflammatory foods and try to reduce carbs when you can. Realise the pred is helping you and you need it at present. Rest as much as you can - helps to keep weight down and the sluggish feeling). When the PMR was on the way out for me I started to have more good days than bad, started to feel generally better as pred reduced, lost some weight ( and the fat face reduced). When I got near zero I started to feel like my old self. Now I've been off it for nearly 4 months and feel good. Hope this helps.

  • Thanks Suzieh - that about sums it up! But working is a real chore - I cn do some at home but cannot manage a full 8 hour day anymore - so try and split it - often in the night! Hopefully, my good days may start soon, and really want to get rid of the strange hamster face and my extra 10lbs! So pleased you are off the Preds, good for you!! I have forgotten what my old self was ....

    Thanks for the reply

  • I think you were reduced from 40mg far too fast - more normal would have been at least a month at 40mg. To be down to 20mg in just over 6 months when you have had a flare in the meantime is quite a feat. Some work done between the Southend rheumatology department and a London hospital a couple of years ago showed there is still evidence of inflammation in GCA after 6 months at high dose pred, that is above 20mg, even if the blood markers are normal and the patient has no symptoms. If you reduce too far too fast the inflammation resurfaces and you have symptoms again. It does appear that higher doses of pred do have an effect on the real cause of the inflammation, they aren't just reducing the inflammation while the cause carries on underneath (does that make sense? I know what I mean but not how to make it clear) but once you go below a certain level that inhibitory effect is lost and the autoimmune process starts up again.

    If you are reducing at 2.5mg at a time that may also be too much for your body, even at this level. Some people are very sensitive to changes in dose, especially I think when they are having to continue to work which is quite stressful in itself.

    Have you seen this?

    But you know - after 8 months it is hardly surprising you are struggling if you are still working full-time. GCA is a serious illness, the underlying autoimmune disorder causes a lot of symptoms in itself and that is almost certainly where the fatigue and sweat stem from. Your rheumy may not be bothered about them - but he isn't having to deal with them. More rest would probably help.

    You mention your tummy - what other medications are you on? Is it just stomach or all the way through?

  • Thanks PRM Pro, so the tummy can be anything from IBS on and off all day, to stomach cramps from the front going round to the left side. And nausea.

    I take Lasoprazole for tummy, preds, chewable VITD Cal tabs and Risonodrate once a week. Atarax occasionally if I need to sleep - but it leaves me feeling miserable.

    Work has said they would reduce my hours (which the Occy Health supported) but they suggest reducing hours but not work load! Therefore that causes additional stress - so at the moment I still work full time, albeit at home sometimes. It is still under discussion.

    Thank you for taking the time to answer my queries.

  • If it were me, I'd try dropping the Lansoprazole for a while and see if that improves the gut problems. PPIs (that group of medications) can cause bloating and diarrhoea, sometimes bad enough to confine you to the house! Omeprazole is often a culprit, but Lansoprazole can do it too. If you have problems with the pred without the antacid medication, try taking it in the middle of breakfast so it is well sandwiched. Lots of us swear by plain organic yoghurt for stomach protection. And ranitidine (Zantac) does the same as PPIs, it is older and has fewer (and different) side effects so you could try that instead.

    Does the risendronate make it worse on the days you take it? It can also cause abdominal pain (and muscle, joint and bone pain).

    Yes - met the "Do feel free to reduce your hours but please still do the same amount of work..." approach before. Good for them - not so good for you!

  • Thank you will try your suggestion, will be open to anything that helps.

  • Hi. Sounds like where I was a few months ago with brutal fatigue, very poor sleep, and brain fog that made all tasks hard and consumed every ounce of energy I had. Have you considered trying to take the pred at night? And what kind of vitamin D do you take?

    Won't work for everyone, but I have been taking pred successfully at night for 3 months now- between 9-10 pm. Fatigue disappeared and significantly better sleep and concentration levels happened immediately. Previously, I wasn't able to fall asleep till 1 am and/or waking at 3-4 am. Now I can fall asleep easily at 10:30 pm and sleep 7-8 hours regularly. Life is pretty good!

    I still need to pace myself and rest as needed, and initially had neck pain/stiffness that I gently stretched out when I felt it tightening. The neck symptom have almost disappeared now.

    I also switched back to taking 50000 IU vitamin D (D2) once a week. This really makes a difference for me. When I took 5000 IU vitamin D (D3) daily- it didn't seem to help at all.

    I was so frustrated with the fatigue/sleep/brain fog issues. Dr just said if I still felt that way in a month to come back. Hope you find what works for you. Hang in there.

  • Thanks Meg - I may try that. So for the first time - did you take your dose early or miss the morning then take in the evening? AdvCalD 3 tabs are the ones I take a chewable lemon flavoured chalky tablet.

    Like you were, I am so very frustrated at the moment.

  • Lesley,

    I took my full morning dose, and then another full dose in the evening. I figured my body can handle the extra burst fine, but didn't want to add stress my body by going without.

    It worked problems.

  • Ok Meg I will give it a try .... in for a penny .... etc

    Many thanks

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