Firstly, I am so grateful to have found you all. I am going through this completely alone. I don't even have confidence in my rheumatologist.
I need some advice on Nexium...anyone got any experience with this?
Background: diagnosed end of November 2019 (One week after my 70th birthday!) (PMR, then 2 days later in hospital with GCA?) GCA diagnosed on symptoms. Put on 60mg for 3 weeks. Rheumatologist then got me tapering by 10mg every two weeks until 20 mg. I am now on 20mg. Now he wants 5mg every two weeks. I am going to go much slower.
I am still working almost full-time, but at home (online). Collapse with exhaustion every afternoon. Very dizzy. No energy. Heavy legs. Withdrawal? Pred side effects? Or PMR?
I was given Nexium. I have never had stomach problems. At what pred dose is it OK to stop taking it? Can I just stop?
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agingfeminist
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As you rightly sense, your Rheumatologist’s priority seems to be to get you off Pred asap. Have you no GCA symptoms at 20 mgs? The collapsing with exhaustion would be a logical response to a morning’s work. Also you are undoubtedly still ill with a serious systemic illness. Pred just keeps the dangerous inflammation down. Continuing a fast withdrawal is likely to result in a relapse. You are likely to have this illness for several years. The aim of tapering is to reach your perfect dose, one that allows relief from symptoms and for you to lead a scaled down, relatively normal life. This perfect dose can be missed if you go down in big leaps.
Definitely look at the slow tapers pinned on this site and find one that suits you. Perhaps rest at 20 mgs and take stock and only slow taper when you feel that it is right ( a lot of intuition goes into a successful taper.) Be prepared to go up in dose at any sign of GCA symptoms creeping back.
I am not personally familiar with Nexium. I was prescribed Omeprazole. I came off it quite quickly, with no ill effects. I just have Greek natural yoghurt to line my stomach before taking Pred. Some people advise a tapering of these drugs because they can cause an increase in digestive symptoms upon withdrawal. I am keen not to complicate things with unnecessary drugs. For example I would not take Alendronic Acid unless I had a poor DEXA Scan result. Can you negotiate anything that would ease your working life? I find it astonishing that people can work while suffering GCA.
Thank you so much. I am learning so much here. My rheumatologist's attitude was: you need to come off this dose as fast as possible...if you have problems just increase the dose.
It is clear this yoyo dosing does no good. I haven't had any real GCA events since tapering though I do wonder at every headache and pain behind my eyes what I am dealing with. I just take a couple of paracetamol and hope it goes away (which it has done so far). If it goes away with paracetamol I assume I am OK.
I am also just getting reconciled to the fact that this is long-term...not the way that it was presented to me by the doc.
Before taking my first dose of prednisone the PMR totally paralysed me when I first woke up...at least 30 minutes to get out of bed...and getting dressed was almost impossible. I still don't understand why the disease hits so hard in the morning...
It is because the inflammatory substances that lead to the inflammation which causes the symptoms are shed in the body every morning at about 4am. The antiinflammatory effect of the previous day's dose of pred has usually worn off by then so the inflammation gets built up until about an hour or so after you take your new daily dose of pred when the blood level is high enough to help again. There are a few ways of improving that situation - but a good start is to allow the patient to be on enough pred to clear out the built up inflammation!
Your rheumatologist obviously doesn't understand GCA - I would be seeking one with a bit more knowledge and a lot more compassion!
Hello. Sorry you’re not feeling you can trust your Rheumy. Your reduction plan sounds too fast from now but you say you’ve already decided to slow it. Are they actively seeking to get you off Pred in a certain time?
Re your stomach pills. My stomach was quite sensitive to Pred so I wasn’t able to stop worrying about irritation until I got to 1mg, so 20mg would still be bad for me. I reacted negatively to the PPI drugs like Nexium so I ended up on coated Pred. You mustn’t stop PPIs quickly because you can get an overproduction of acid, so they need to be tailed off. At this dose level, if you are not getting undesirable effects I’d stay on it for now.
The symptoms you describe sound like those of all of the things you are wondering. At 20mg I was still needing a solid 2 hour sleep in the afternoon just to make it through the evening and I wasn’t even working.
You are right, it makes sense to stay on the Nexium. 20mg is still a lot of pred to be throwing at my gut everyday.
Working isn't a particularly easy choice on many days...but I can't manage without the income...(I still have family members that I support financially). So I push myself every morning...get up...get dressed...eat breakfast...work. Once I get started I usually feel better...until I feel exhausted!
The doc is very cavalier about coming off pred...you reduce and then when you have a problem you increase. Nothing to discuss!
My docs had the same attitude so I said that the experience of high doses and withdrawal when I reduced made life so difficult and unpleasant that I wasn’t prepared to risk reducing faster than my body went into remission. Relapse wasn’t an option, so I was going to reduce as per slower plans I had found. Cue eye rolling and comments about the dangers of the internet and predicting doom from the Pred. To which I replied that I was taking measures to not gain weight (they could the proof before them) and get diabetes and that I had to get through my life, not them. All the while smiling but deadly serious. I’d still leave their office and cry though.
Now, your work. GCA is serious so if it was me I’d make a plan B for if I couldn’t work because it may happen any time. Pushing yourself puts you at risk of this so it is a tricky balancing act. One day you won’t be able to as it happens to all of us as we age and other limitations get in the way. I don’t know your circumstances but if these relatives really have to depend on you, have you got a plan for them if you went under the proverbial bus?
Dear SnazzyD, thank you for your wise words. I have never been good at pacing myself! A major personality shift is required here. If you see my reply to DorsetLady (below) you will know that I am only slowly getting to understand that I am actually ill! I know that sounds ridiculous. Part of the problem is that everybody round me also can't adjust...they just assume that this high energy person will be back to normal next week. Take the medicine and get better...end of story.
You asked which country I am in. I live in Israel...really not a good place for reducing levels of stress in your life...especially at the moment! I have been relaxing this afternoon watching the BBC program 'Escape to the Country'! It feels like 'Escape to another Planet'!
I don't have a plan B and it's not so easy to see what it could be. But you are right...I do need to think about it...too hard to do at the moment.
I am in a sort of denial about the whole thing. I feel like I should be just getting on with my life...I am taking the prednisone to deal with the pain and the inflammation. I haven't allowed for the fact that my body is not OK.
I am beginning to realize that I am doing myself no good by trying so hard to push past the terrible exhaustion that overwhelms me.
Coming to terms with a new me is going to be important...I am not there yet.
But the great thing is that I feel I don't have to follow the dictates of my rheumatologist and decrease as quickly as possible. A gentle taper feels much more in tune with how my body is feeling at the moment. Having that sort of control will help.
I do feel such a deep sadness about losing the old me. I hardly recognize myself anymore. I know I should be much more grateful to be able to survive this illness...but just at the moment 'surviving' doesn't seem such an enticing option. Don't worry, I am not suicidal! or even deeply depressed. Just trying to get a grasp on the new reality.
We all start off like this, blinking into the light of a new dawn but the world outside has changed. It is very difficult to think of ourselves as broken and in need of healing. Most of us have to cope with those around us expecting a service that we have provided with no real thought for us but we are only too eager to collude with this. We convince ourselves it’s sustainable but it rarely is.
Unfortunately Pred’s stimulant effects gives false energy so that we can stay in denial for that bit longer. When it does hit, the other side effect of anxiety or feeling down (the condition does this as well) doesn’t help feelings of hopelessness for the future. I’ve had to learn to see myself as someone other than the physically fit and lively, whirlwind doer as all things to everybody. It’s a great life lesson but it’s one where I’ve had to be dragged kicking and screaming to the lesson to learn. However, it is liberating and, horror of horrors, one starts to give to oneself.
As SnazzyD says we all feel like that at the beginning.
Ok it’s not the old you, but life does go on- you just have to accept that temporarily you cannot do what you did pre your illness - but that doesn’t mean you have to curl up in a ball and give up! Far from it!
Do things at your pace, plan ahead more - and if you can’t do something ask somebody else to do it - that’s sometimes the most difficult! But once you’ve done it the first time and realised you’re not being a wimp (just sensible) it becomes easier next time you need help.
If you read my story - you’ll see (sorry no pun intended) I lost the sight in one eye before I was diagnosed (for reasons I won’t go into) and that was pretty devastating. I could have easily decided that was IT - I wasn’t going to do anything - but I couldn’t. My husband was quite ill - had been for a long time - so although he rallied and looked after me - I still had to look after him as well. Isn’t that’s what a relationship’s about. So we stumbled through the first 6 months together - unfortunately he then took a turn for the worse and passed away some 9 months later.
Again I could have given up but I didn’t - in fact he was adamant that I shouldn’t mope at home! I wouldn’t have anyway I’m not that sort of person, but for a change I did what he told me to! Probably the first time in 46 years 🤦🏻♀️.
So 3 years into my GCA life I flew from UK to NZ (my daughter and her family live there) stopping off in Singapore for a couple of days on my own.
When I got home after 6 weeks holiday I was really exhilarated and proud of myself.
Been back again - and hopefully going again this Christmas
So I always say “if a one-eyed arthritic late60s/early 70 year old can do that” - so can anyone!
Take care, good luck, and don’t be pressured to do what your doctors might want - listen to your body.
And you will be able to do things again...but it doesn’t come overnight....just hang on in there for now...and you’ll be surprised how better you will feel in even a few months.
Your right about your Doctor's unrealistic Tapering Timetable , it's ridiculous.
Look at the Tapering options on hear and request via the GP or Specialist that you can try one of these recommended options to see if you can have success with it first.
Just let them know that you would feel more confident and do not want to jeopardize your good progress and success by going so quickly that you bring on symptoms and then need to yoyo on the doses. Remind them that you still work and have extra physical Stress so reducing too quickly would be more difficult for you.
Hopefully your sense will out!!
Coming off the PPI is a complex decision and is down to you if you want to attempt it to see if you can cope without it , unless it was prescribed for a specific health issue you haven't mentioned , rather than the protect your stomach ' just in case' theory.
You may want to wait to try to taper off a PPI until you are at 15 mg or less .
If you had no stomach problems before , and have had none since you can try your own trial and taper off it to see if that works for you.
You replace the PPI with eating a small bowl of probiotic yoghurt and a little honey before your Steroids or any strong medication in the day.
You begin using the yoghurt, if you haven't done so before, for a full two weeks BEFORE you start to Taper off the PPI.
You will have some wind and may have some indigestion as you come off the PPI for a few weeks , this can be relieved with a peppermint tea or polo or an indigestion tablet.
You then alternate a day off and a day on the PPI for a week. Have one every two days the following week . At the end of that week go PPI free , if you find you have no stomach symptoms like indigestion pain or Discomfort after the initial withdrawal side effects you may be fine to use the Yoghurt from then on.
If you find that you start to get stomach symptoms that give pain and discomfort each day and worsen you can still use the Yoghurt but build up the PPI again .
But as with any trial of medication or reduction you have to do what will work for you and you are confident to do.
Don't forget , you haven't lost the ' Old You ' . You are still You , it's just the things You do that need to change for a while, not the Great person doing those things . xxx
If you are suffering so much Fatigue it might not be the best time to start a new Taper , you might be better speaking to the GP about the Fatigue and taking a few more weeks to restore your strength with rest and Self Care.
If you do Taper may I suggest you don't try to do the whole 5 mg in a month with Fatigue either , it's not likely to succeed , you may even have a Flare that means you need to increase above 20 mg , so rather than speeding up your recovery it will slow it down.
Your Doctor may have a time table but your body and PMR can't read it. Explain how you feel , and get their approval to reduce by 2.5 mg over the month instead.
Thanks for asking how I am , much like yourself , Fatigue Cubed at the moment , the cold weather doesn't help much , keep in touch and feel free to " Message" me via my profile page if you want xx
Hello Agingfeminist do hope you're feeling better. The GCA scares me so much as I have only sight in my right eye due to having contracted bacterial meningitis in 1994. What were your symptoms for the GCA and how soon were you caught? 60 mg for 3 weeks was a long time, but saved your eyesight, thank goodness for that.
I had been diagnosed with PMR and then two days later had sever visual disturbances and went straight to A and E and was admitted immediately and given 60 mg of pred.
Now trying to taper off...not so straightforward and I keep worrying about getting another attack!
Morning, Thank goodness not. My Rheumatologist has warned me that if I get a severe headache, pain in jaw when eating and blurred or double vision to go to hospital immediately. Nasty thing to happen with this particular arthritis and strange it doesn't happen with RA and Fibro too, as they're all inflammatory conditions, just PMR seems to affect these areas. Very frightening !! Don't blame you for being concerned. So, was it just the one dose of 60 mg they gave you, and was it intravenous or tablet? If I manage to get my tapering down to the 5 mg by June, without any flare up, just to protect myself when we go abroad on a cruise for out 50th wedding anniversary I feel I want to take enough Prednisone with me just in case this should happen. So far so good with my tapering, but it's very early days. Still taking 9 mg until the end of February, then will be on 8 mg for March, tapering by 1 mg per month.
PMR is NOT an arthritis - it is a vasculitis, inflamed blood vessels not joints.
GCA is an ARTERITIS, inflamed arteries, and PMR is closely allied although it isn't entirely clear where one finishes and the other begins and are linked. One option seems to be very small arterial-side capillaries supplying the larger arteries being affected.
Learnt from you again. Wondering why this isn't explained to us on diagnosis. Makes me wonder why some people get PMR while others don't. And some are unlucky enough to suffer GCA and again while others don't....our bodies are all different.
I took 60mg for 3 weeks and then began tapering...2 months later I am on 20mg...occasional pain behind my eyes which make sme a bit jittery! but I have a 60mg dose in my pocket...even when I go for my 10 minute daily walk!
I am now tapering very slowly...no rush anymore...just trying to listen to my body.
What a lovely idea to have a cruise planned...you can take lots of pred with you and you are prepared for anything. I don't feel ready to plan anything yet...not sure I believe in the future at the moment....too exhausted after a morning's work! BUT so grateful I can still work.........
You're obviously much younger to still be working. I consider myself so lucky as haven't felt any fatigue or many other symptoms many are experiencing. Once I took the first 15 mg of Pred within an hour or so the pain had left me. I do feel a little achy on some days but it doesn't stop me from doing what I want to do. I think keeping active with this disease is key. Had I been diagnosed with PMR before booking the cruise I don't think I'd have gone abroad this year. Always feel more confident when on home soil if anything should go wrong. However, we can't go through our lives thing 'What If' that would be no life and we wouldn't do anything. A good job I have a very supportive husband who is always reminding me of this. We are away with our group of 10 friends, so should be a lovely experience for our first ever cruise round the Med.
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