Help medications

[Pinkseptember]

Hi I’m new here I’m just wondering can anyone help me with side affects from these two medications, I don’t even know what community to be in as doctors don’t know exactly what’s up with me but hopefully I’m going to see a rheumatologist. Back story- I have uveitis for the last 2 and half years and been on prednisolone for that amount of time from 25mg down to 5mg but now I’m on azathioprine too at 50mg for now but my problem is I have other symptoms which is psoriasis, hypermobility, sever acid reflux and stomach problems to bruising for no reason. The problem is no one knows the reason behind all of this and I get chest pain a lot and aches and pains to my heart rate increasing quite high even when doing nothing and feel like I have adrenaline rushes for no reason and don’t feel like I’m not being taken seriously by my health professionals . I’ve had ecg and they said my heart is fine..so im wondering is all this side affects from the medications or something like a autoimmune disorder because it’s giving me really bad health anxiety and panic attacks and I never was like this before I had uveitis. Any advice would be helpful thank you 😊

[SheffieldJane]

Poor you! Not having a definitive diagnosis makes you feel desperate. Obviously uveitis is an inflammatory autoimmune disease of parts of the eye. It can also cause inflammation and pain in other parts of the body. Psoriasis often comes hand in hand with psoriatic arthritis that causes all manner of pain and problems. Severe acid reflux and stomach problems can come with long term steroid use as can the bruising. The panic attacks and anxiety can also be provoked by Prednisalone and won’t be helped by uncertainty and doctors who don’t have great communication skills. You may well be feeling the effects of your Adrenal glands trying to work after being switched off by Prednisalone. Their capacity to work effectively ought to be tested in the Endocrinologist department via a morning cortisol test and or a Synacthen test. I am glad that your heart is fine. I think it’s a good idea to see a knowledgeable Rheumatologist, this is their line of country apart from seeing an Opthalmologist for your uveitis. Good luck with this tangled web of autoimmune symptoms that I and others will be familiar with. Keep your courage, they seem to be doing the right sort of things for you. Good luck with the Rheumatologist , I hope you get a great one, and ask about having the capacity for your adrenals to work to be tested. Also ask about psoriatic arthritis - another drug may be the answer. Let us know the outcomes.

[Pinkseptember in reply to SheffieldJane]

Thank you, I’ll keep you updated 😊

[Knip in reply to Pinkseptember]

The drugs used for psoriatic arthritis and rheumatoid arthritis tend to be the same....quite often Methotrexate is the first that is tried. You might find additional help on the Reheumatoid Arthritis site. No harm in joining more that one...they are all helpful, and those who suffer an illness tend to know how you feel and someone will probably have experienced the same symptoms as you are. It's tough call. I hope you can get some more definitive answers soon. x

[SnazzyD]

Hello, ditto to what SJ says. There is a lot going on. It can be quite difficult to sort out what is causing what even for the docs but it is no excuse for leaving you feeling lost with it. For sure Pred can cause stomach irritation (you should have had meds for this), thin skin and psychological effects. Now you are down to 5mg these should be less but can still be a feature. But as SJ says your adrenal glands will have been suppressed by the high doses of steroids and when the dose drops they don’t always switch back on. It can make one feel like one is getting ill again and losing the plot; I certainly remember feeling extremely emotionally flakey. Do read this from our FAQ’s as everyone should know about this after being on Pred for more than a few weeks. Docs rarely tell you this bit of recovery. healthunlocked.com/pmrgcauk.... There is someone here who had a diagnosis of uveitis and hopefully they’ll see your post.

[Pinkseptember in reply to SnazzyD]

Thank you, hopefully I will get somewhere 😊

[PMRpro Ambassador]

You haven't yet seen a rheumatologist? What is your GP thinking about?

The reflux, bruising and stomach problems could be the pred - were you given a PPI (omeprazole or the like) when you were started on pred? If you were, then they can also cause stomach problems! Some people get palpitations due to pred but they can also be due to an underlying autoimmune disorder damaging the cells that govern heart rate - that part of PMR is what causes my palpitations in the form of atrial fibrillation. A one-off ECG is no use for diagnosis unless the palpitations occur while it is being done - and I have had a lot of ECGs that showed nothing at the time - they are a photo, you need the video to have any chance of a proper diagnosis and I have had the video version over several days that missed it too!

Uveitis and psoriasis can be part of one form of inflammatory arthritis and your GP should have been thinking on those lines - and referral to rheumatology long ago. Especially if you also have hypermobility which might suggest a connective tissue disorder.

If you have palpitations and chest pain then you need to call 999 - chest pain must always be investigated and getting the paramedics is probably the best way of catching the evidence at the time since they carry an ECG machine at the scene.

[Pinkseptember in reply to PMRpro]

Thank you, and yeah I’m on omeprazole from 1 a day to 2 a day to 4 a day with my stomach problems, I’m constantly being sick and nausea, they’ve given me anti sickness tablets too but my esophogus has spams all the time and the eye doctors said I wasn’t a candidate for oral use of these medications because of my stomach problems but yet still put me on them. My gp is leaving it to the eye consultants but they aren’t really listening to me unfortunately

[PMRpro Ambassador in reply to Pinkseptember]

It might be worth asking to try a different stomach protection medication - those symptoms can be caused by PPIs (yes, I know, no logic!) and trying a different sort like famotidine or cimetidine may help. Or it is possible to get enteric coated/gastroresistant prednisone in the UK and that can make a big difference too.

Are you on any other medications?

[Pinkseptember in reply to PMRpro]

I’m on Prednisolone , Azathioprine, Omeprazole, Metoclopramide and I’ve been on stemetil too to help with sickness and vomiting.

[PMRpro Ambassador in reply to Pinkseptember]

Just been looking - and of course all you describe may happen with azathioprine! Who put you on that - the ophthalmologst I assume as it plus steroids are standard for uveitis.

[Pinkseptember in reply to PMRpro]

Yeah the eye consultant put me on it as the prednisolone wasn’t working alone but they know I have other medical issues but it’s just a fight to see another consultants and they do think it could be all connected but they are just treating the eyes, but if I can’t get my stomach sorted they are putting me on methotrexate but I’m worried as I’m young and it may affects fertility but they arnt really given me a choice

[PMRpro Ambassador in reply to Pinkseptember]

At least if you are that young you haven't got what we all have! PMR and GCA are rare in under 50s.

[Slosh]

Perhaps look into Mast Cell Activation Syndrome. Just a thought.

[Pixix]

Do you have PMR or GCA, please? Or is the pred purely to help with uveitis? Interested as I’m on the cusp of being diagnosed with other diseases, in addition to PMR, which I fear may also be treated with pred!! Thanks…if you search on pred in FAQs you will find so much info re side effects, I think!

[Pinkseptember in reply to Pixix]

It’s just get treated for uveitis but I’m being referred to a rheumatologist as I have other medical problems but it’s a fight to see other consultants to find a cause of all this, as prednisolone hasn’t helped my eye in the last 2 and half years and now in my other eye so I’m on azathioprine but if that doesn’t work I will be on another medication. Trail and error I guess.

[Pixix in reply to Pinkseptember]

OK…I’m being referred to a different rheumy as im a ‘difficult & complicated..no, he said weird, & weird is right, case’ with multiple diseases ongoing & new ones joining in. Omeprazole didn’t help me & I suffered a lot with stomach pains, so my doctor put me onto lansoprazole, which works well!! But remember this is a PMR & GCA sufferers forum, you may find other forums that cover uveitis, hypermobility, psoriasis that have info, too?! Good luck!

[YummyBear]

I will stick my neck and say that I am certain the meds I've used over the years have caused adverse side effects and in some cases made my conditions worse. Even though the pamphlet within the meds does not state all the known side effects, each person's system can react in an entirely different way and could clash with the various makeup in the body. If the medication side effects do not mention certain things, it is up to everyone to check with pharmaceutical companies to make them aware or the governing body for drugs, who could be helpful.