I have been tapering from 60mg to currently 8mg since diagnosis of GCA in May 2018. Had a couple of flares and was put on Met and then Lev December 2018. Since taking all the prescribed drugs (Omnipresole been taking for years, Aspirin, chewable vit D, Alendronic Acid, iron tablets) I have had horrendous diarrhoea which became worse after taking Lev. My potassium has been lowering since January 2019 (2..9). I was taken off Lev last week. I have put on almost 4 stone in this journey. I was hoping the weight swelling and tingling in feet and hands would start reducing but it hasn't Before the symptoms of GCA reared its ugly had I was in agony with painful shoulders and joints but noever diagnosed with PMR
Since tapering I am also experiencing painful muscles and tendons. All this blanketed with deathly fatigue. When will all these symptoms start receding can anyone give me an idea. When I complain to Dr. She says drug side effect..
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Cairn
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Hi cairn, this message just popped up for me now. I presume since unusually you have no replies, no one else saw it either. The tendons may well be due to pred and weight gain if in legs, knees or ankles. Are they sure you don't have pmr too? It may have been hidden at higher doses of pred.
The mixture of meds won't have helped up, but I wondered if you had tried a low carb approach? This link is quite good and you can have a free period of use.
Even if the meds caused diarrhoea they should be investigated now if it continues. I have had diarrhoea from May badly, but since I gave dairy up it has eased. The Dr sent stool samples off and I had colitis/inflammation, had another more sensitive test for blood but was clear. I am currently waiting for gastroenterologist appointment. I think you should be pushing for the same and keep a food diary so you can track if it is a food that does it. I hope you feel better soon. btw- I presume they have checked you blood sugar? High blood sugar combined with dehydration won't help matters. On days your tummy is bad you need to increase your fluid intake. 🌻
Thank you poopadoop. That helped. I am still feeling bewildered by the ferocity of this disease and its intensity. I am still waiting to feel like me again. I still wake up every morning thinking I am going to do this and that and then the disappointment of still not completing my goals.
I have had cameras both up and down. Down due to a stomach bleed. They discovered polyps and so increased the Omnipresole. Up they discovered diverticular disease. Just gave me a leaflet and sent me home. I do survive and my friends are amazed how cheerful I keep. But I really am getting quite fed up with all this. It feels like I am living in someone else's body. My legs and feet are sort of numb/tingly. I stopped Lev last week and hoped it would calm down by now. Each week I have a little celebration as I drop 1mg of pred. I am sorry to winge like this but I am eagerly looking for some change. Weight reduction, not feeling nauseous, my hair returning to normality (the kids call me Albert Einstein), being able to walk down garden unaided and the list goes on. I keep normality in my minds eye for one day I will be there.
Oh cairn, you are coping with a lot. Did you mean to say you reduce 1mg week or a month? If the former then it won't help how you are feeling. Numb and tingly legs are concerning. You need to check if it's a nerve thing from your back, a vascular issue or neuropathy. You definitely need to get hba1c checked every 3 months.
The main thing is to do little and often. Start by 10/20 steps indoors every hour, 10 steps out and 20 back. Set your phone alarm and leave it 10 steps away. Walk over turn off, set for an 1hr and leave it and repeat for a week (a small drink of water each time). That way you are exercising your core getting up and down and legs by walking. Then do 15/30 the week after.
Lots of us struggle with not getting through the "task list" we set for ourselves. I just shift it to the long term list. I do hope you feel better soon, but you can always post when you are fed up!!!🌻
Certainly not for GCA. I have monthly blood tests because of the LEV and the last one was a couple of weeks ago. CRP 3.2. However I have not been diagnosed for PMR and I am suspicious which I will discuss with GP in a couple of weeks. I do not know if CRP is affected. My thoughts are that it may. I will need to investigate this.
I’ve got to be honest. I don’t have a list so I don’t get disappointed! I do what I can and go with my flow. This usually means that I take out a couple of hours in the middle of the day, (I’m retired so I can), which I look forward to. Sometimes too much activity arrives at the same time but the stimulus is so good it’s worth it, and I rest up as much as I can afterwards. What I would say is that I find social interaction can be as exhausting as too much physical activity and I’ve had to factor that in. And of course I get fed up sometimes and just want to chuck the pills out of the window 😀. Then I remember how awful I felt before I took them..😱 It could be worse! Sorry, this has turned into an essay!
Would they let you try ranitidine instead of the omeprazole? But my suspicion is you will possibly have to wait for the leflunomide (is that what you mean by Lev?) adverse effects (diarrhoea and neuropathy) to fade. And of course your potassium was falling - goes with loose stools.
And find another doctor - she is useless if she can't be bothered to think straight and not just blame the medication.
I have been on omeprazole for over 20 years prior to the present and had not problems. And yes Leflunomide is what I was on. Currently eating potassium rich foods to get potassium up (blood test due 19th Sept). I stopped Lev on Wed 28th August, just over a week ago and legs still swollen etc. I am assuming that because it took 6 weeks to get into my system it could take 6 weeks to get out? I have also dropped another mg to 7mg prednisolone and feeling incredibly tired too. Many thanks for your support. I am trying not to make a fuss about all this but sometimes I just get concerned that medical speaking I am on my own. Not seeing Rhumy until December when I should be down to 5mg pred. I don't know what happens after that. He has warned me to be watchful for what I don't really know.
At that level you should have been given an infusion - bottom of normal range is 3.6. Here it would merit hospitalisation until stable at an acceptable level. And it may be contributing to the fluid retention.
You may have been fine with omepraxole on its own, or with one other drug. But polypharmacy has its own problems and risks. If 2 drugs have a potential adverse effect they may reinforce each other. Unfortunately medics don't appear aware of that.
If it were me I would be jumping up and down and shouting. In A&E if necessary.
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