4 years before I was diagnosed with PMR (27th April 2016) I had investigations for mouth sores...not thrush. Told it was auto immune and that I also was Vitamin B12 and Zinc Deficient I get injections for the B12 and take zinc supplements. Two years ago I had investigations for stomach problems. Told it was gastritis ( autoimmune ) and given PPI 20mg.
I have posted before about the problems with my Pred as my GP started me on 20 and after 1 week because I was struggling reduced me to 15. I have since come back to 20 and find that my mouth problem is back and the gastritis is there all the time.... wakes me up! Am now taking 30 mg a day of the Lanzoprozole and am taking probiotics. I do not feel that the PPI is helping at all. Is there anything else you can suggest. Incidently my blood pressure is in the 190s
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May10
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Well for a start your GP needs to consider BP meds!
An alternative to PPIs (and there are others besides lansoprazole and may be worth trying) is ranitidine - Zantac. Apparently PPIs don't work in about a third of patients so that may be the problem. Many of us have found yoghurt replaced PPIs - so adding it in might be soothing. I assume you take your tablets in the middle of a meal? Eat half, take the pred, eat the rest - that was a recommendation from a pharmacist.
It is possible to manage PMR with steroid injections - they probably don't make a lot of difference to other side effects but they do appear to help greatly with gastric ones. One lady in the south of the UK is on injections because of a history of severe gastric problems - she has recently had the dose/frequency upped because she developed GCA. It does work. They are mentioned in Recommendation 5 of the 2015 Recommendations for the Management of Polymyalgia Rheumatica:
Does your rheumatologist - I'm assuming here you have seen one? - accept these things may well be associated and that your autoimmune disorder may not be simply PMR? I wonder if it may be worth you going onto the VasculitisUK forum and seeking their advice? They have amazing contacts for experts in various forms of vasculitis and I have the feeling that your case is maybe not as simple as it has been made to sound.
Thank you for your quick reply. I have had HBP for a number of years but with my Medication Losarten and a decent diet and the fact that I played golf three times a week, I managed to get it down to 139/65 ish. At the start of this PMR? journey it was over 200 and at the moment hovers around 190. My diastolic rate is always low. I also have an underactive thyroid. Sound like a walking disaster!!!!!
My GP has referred me to a rheumy but I am having trouble getting an appointment. I live in Yorkshire and York and Selby are end of August and September. Harrogate no Appointments and Chapel Allerton which is my preferred hospital also have no appointments. I cannot get an appointments with my GP and have arranged a telephone appointment which is not until 16/6 to find out how I can go privately.
I have never found the PPIs helpful...always got more relief from Gaviscon.
I suppose it is the summer - however, I would have thought a GP letter requesting an emergency appointment would result in something. Urgent is meaningless. Chapel Allerton would be my preferred option too (though I am very biased there!), Unfortunately the best people I know at Chapel Allerton don't do private as far as I know. However, if you were to contact the NE support group they may be able to direct you to a good option who does private work - I know one at James Cook, Middlesborough is pretty good.
Thank you for making me think that perhaps I did not have PMR. I had an emergency appointment today at our surgery. The GP I saw was very concerned with my condition and agrees that it is likely not to be PMR. My original doctor also was not convinced. Because of breathlessness I was sent today for a chest xray and they are having a case conference tomorrow and will call me tomorrow night. I might need a scan. I have another appointment booked at the surgery on Wednesday and a private appointment is being booked with a rheumatologist. At last I feel I might be getting somewhere. I would have not been aware of this without your help. May
Good (the GP's response, not the fact you are ill of course!) - though it doesn't NEED to be a private rheumy, your doctors could write EMERGENCY and get a quick appointment too.
I do hope that they find something relatively benign as the cause of your problems but at least they are taking things seriously at last. Do please let me know how you get on and what they decide.
It does always concern me when everything is laid at the feet of PMR and/or pred. All too often GPs tend to take the easy answer - but what you were describing isn't typical of PMR so it shouldn't be classified as due to it.
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PET scan and Pred.
Stomach problems linked to pred
Sores in my mouth
Timing of PPI and Pred
PMR and dry mouth?
