GCA Meds

[Vide]

Hi i have just recently joined and iam finding this so helpful .

I was diagnosed with GCA in May of this year Initially for 4 weeks 60mg of Prednisolone then gradually reduced after being upped a couple of times Which i seemed to cope with .Now on 17.5mg Iam taking all the additional meds but the one im struggling with is Lansoprazole The only reason i know this is i missed it for a few day and had no headaches no tingling in my face and also my swelling went down considerably However i ended up with severe indigestion so i previoulsy had Omoprazole so i tried them and i have now got all the above symptons back again Any advise would be very grateful Thanks Sometimes i feel so alone as Nobody has even heard of this horrendous disease !!!

[SusanneM]

Hi Vide. I have just been discharged from my rheumatologist after many, many years of having GCA (and before that, PMR). Actually, the GCA had gone into remission but coming off the prednisolone and other meds was very hard. I remember only too well trying different meds to find one that didn't disagree with me.

Are you under a rheumatologist? You need to make an appointment and tell them of the problem, you may be able to lower the dose or change to something else. You have enough to put up with and don't need the additional pain of this. I found that in many ways, the side effects of the meds were worse than the GCA itself.

You've done really well tapering to 17.5mg already, that's quite fast. Are you sure the symptoms are not steroid withdrawal?

I wish you well. As you say, it's a horrible disease few people have ever heard of and because you appear to look well, others assume that you are.

[Vide in reply to SusanneM]

Hi Susanne Yes i saw the Rheumatologist on Tuesday and she checked my bloods and did a scan thst have came back all clear and thinks it more a neuralgia problem So has arranged for me to see a neurologist However i did tell her i felt better when i stopped taking the lansoprazole so got a bit annyoyed and told me i must take them Now im back on them and im even worse now .Thank you

[SusanneM in reply to Vide]

Not very helpful at all. See what the neurologist says, they may be more helpful. Good luck.

[Vide in reply to SusanneM]

Thanks Susanne I do have a feeling its the lansoprazole to be honest Take care

[PMRpro Ambassador in reply to Vide]

You may need stomach protection (many of us would disagree from personal experience) but it doesn't HAVE to be a PPI. Famotidine and cimetidine are a different type of drug that do exactly the same job on reducing stomach acid but have different side effects. They are available OTC and might be worth a try. I have heard that there are US doctors who are avoiding the use of PPIs because of their downsides which are beginning to be recognised at last.

One of my pet hates is doctors who dismiss patients reporting of adverse effects that don't fit with their image of how things should be,

[Bridge31]

If the indigestion happens as a result of taking the Pred. then some of us line our stomachs with a good helping of natural yogurt. Then take the Pred buried in a large spoonful.

You are not alone now. You have all of us. 🌸🌻🌼🌺

[Vide in reply to Bridge31]

Hi Bridge Thank you so much 💓 i will give that a go

[jinasc]

Where you automatically handed, a PPI, AA, Calcium and Vit D? I call them add-ons.

I was given them all - then read the side effects of the ones ending in 'zole' - they can cause aches and pains, so that one was binned.

My Rheumy did not offer AA - I had a Dexa Scan six months later - bones 97% , Dexa every two years, bones never moved.

Calcium and Vit D, Ran into a problem with the calcium - turned out I did not need it and the excess calcium caused grit.

No problem with Vit D - turned out a couple of years later that I ran into Vit D Deficiency - sorted out with very high doses for 8 weeks. Still take Vit D every day.

Pro-biotic Yoghurt and a teaspoonful of Manuka Honey and pred on spoon - no problems at all.

If you take enteric coated, sometimes the dye is the cause of problems, you can wash it off.

[Vide in reply to jinasc]

Hi jinasc Yes i went from zero tablets to 18 not including paracetamol Never really taken tablets before at the age of 61 !!! But just seem so sensitive But everything seems to have got worse 😕 So sat down and read all the leaflets that came with the tablets Gosh !!! I will give that a go Thanks

[PMRpro Ambassador]

Try using famotidine (Pepcid) or cimetidine (Tagamet) - you can get them OTC so you needn't fight to get a trial. They do the same as the PPIs but have a different mechanism of action so different potential side effects. PPIs are notorious for causing problems - so when you ask the GP for a change don't take any nonsense about "it can't be"!

If you have been on the PPI for long you will need to switch to something else even if you want to try taking pred with yoghurt or in the middle of a meal. BUT that may also have been the cause of the severe indigestion when you stopped: stopping suddenly can cause a rebound production of acid which is far worse than normal and obviously can cause indigestion. When stopping a PP, unless you switch to another drug, you MUST taper it the same as you taper pred although you can do it more quickly.

[Vide in reply to PMRpro]

Hi PMR pro Thank you i will try the chemist to get something different then I just couldnt work out at the beginning what was happening then i read the leaflets I thought every morning i take lansoprazole about 2 hours later my face swells up buzzing everywhere headaches and pain in my body So thought i would be smart and try and do without it My GP has not been very helpful up until now But i may try them firstly as i did feel a bit normal for a couple days 😀 Thank You again

[Tahiri]

Vide, I was also diagnosed with GCA in October 2019 , following a viral infection which I now believe was Covid. I responded very well to the Prednisolone , and my swollen face reduced as the steroids reduced. I was prescribed 75 mg of Aspirin and Adcal D3 but I stopped the Alendroic Acid after reading about people breaking thigh bones etc. On this forum I discovered that cutting carbs was the secret to preventing weight gain. I’m on 2.5 mg now , after two flares but must confess to overwhelming fatigue. My Rheumatologist spoke by phone last week and said that GCA normally runs it’s course over two to three years. Hopefully I’ll manage to decrease further soon ( I’m taking my time - as advised here). Don’t panic as I did . It’s treatable. Just watch your appetite- Lol .