Hi, my name is Sandy and a I am fairly new here. First of all, for the past 4 weeks I have found this site a lifeline and thank you for setting it up and all the good advice.
I was suspected of having PMR when I was 48. To be honest I didnt want to believe it so I managed without steroids and got onto a cocktail of painkillers and antidepressants that, although took the edge off, left me in pain and I struggled on for a good couple of years. My ESR levels were always elevated but not horribly so and I kept a good look out for any GCA symptoms and always checked with doctor. After about 2 years it didnt seem so bad and up until Nov 2014 I was reducing drugs and working almost full time.
I am a self employed Extend exercise teacher for over 60s and anyone with a disability and chronic illness and also have back and shoulder injuries which over the years have turned into arthritis. Teaching exercise helped me to keep mobile, flexible and stop me gaining more weight. In Nov 2014 I injured my right knee whilst working, had an Arthroscopy in Feb 2015, made a slow recovery and managed to work again but only about half as much as I did. In about Sept 2015 I started to feel more and more pain and stiffness and had trouble getting up, getting dressed etc. Nov my GP tested my blood again to find elevated esr. I reacted the same way. Steroids! No I am far to young! However, I got worse, depression set in. After Christmas I went back to work but then got flu, well I just got worse and worse. Then I started to get headaches and visual disturbances and tongue pain so back to GP straight away.
On 18th March I started on 30mg Prednisolone, 19th March could reach up to get something out of top cupboard, 20th March could wash my own hair and get myself dressed. As instructed by GP I reduced after 7 days to 25mg and went back to see her 7 days later. She was really great and I know I have been stubborn but no judgement.
Saw her today and latest esr results have fallen, she didnt mention the actual number. Wants me to try 20mg now for a few weeks. I have had to make lots of drug changes as was on gabapentin, prozac, diclofenac before but the effect on my stomach was bad when starting Pred so had to go "cold turkey" on the drugs, come off of coffee (serious ciffee addict) and I used the kind advice found on here to change my diet to help control this together with Pantoprazole and Ranitidine. Fuzzy head, headache in centre of forehead and pain behind eyes, extreme tiredness coupled with withdrawal has made for a fraught few weeks. Jitteryness thought by gp to be the prozac so we came off that too and now trying sertraline which seems to just be starting to work. On paracetamol too to help the other pain and gp has just given me some more co-proxamol (been taking that for 30 years for my back as nothing else works). So I have an option of something stronger if I need it. So you can see at the moment I dont know whats a side effect of what at the moment or what is actual symptoms. I do know the pain and stiffness has improved by about 80% though.
Suffice to say I am not working at the moment and coming to terms with all that that changes. In a way I am lucky, I have a brilliant gp and found this forum. I do still have a couple of things. I seem to be peeing so frequently, its not an infection, gp has checked. Says its an irritated bladdar. Anyone know anything to help with this? On the good side all those loo trips are keeping me moving! Also I see there are support groups around the country, is there anything in Mid Essex?
Got a kindle copy of Kate Gilberts book and that has been really useful too.
By the way, I dont want to go to see a Consultant Rheumatologist yet, my GP seems to be well up on pmr/gca. I hate hospitals and suffer from anxiety and panic attacks so dont feel up to that unless I really need to. I am having my eyes checked next week though.
This is some journey, seat belt fastened, glad I finally decided to try the steroids. Sorry for the long post but its the first time I have felt like putting it all down.
Written by
S4ndy
To view profiles and participate in discussions please or .
Welcome. You certainly gave had a lot of things going on! Don't worry about longish post, I think sometimes it helps to get things written down. It somehow makes things clear in your mind as well as being therapeutic!
As for your bladder problems, best to stick to water or cranberry juice for the time being. If you drink plenty of water it should make your urine less strong and therefore less likely to irritate, and cranberry juice is always recommended for urinary tract problems. I would imagine the cocktail of drugs you have been on hasn't helped. Did GP not suggest anything for it? Could always check with pharmacist.
No but we discussed what to drink. I am on water, redbush tea or peppermint tea none of which should irritate. Not keen on cranberry and watching sugar content of stuff too as I am a biggish girl which doesnt help. However might have to get hubby to buy me some on the way home. Should have thought of it myself, but brain foggy at the moment but getting better. Big thank you to you as some of your past posts have helped me hugely over the last four weeks of this chemical experiment with my body.
You may think your GP is well up on GCA/PMR and she does sound a gem - but you are displaying signs of GCA and that really belongs in the hands of an expert. Headaches, visual disturbances and tongue pain are typical of GCA and the dose your GP is using is not enough when visual disturbances are on the menu. Or at least - she shouldn't really be reducing the dose until all signs of that are well gone and the ESR is right down to the lowest it will go to. Another lady on the forum has similar symptoms and her rheumy refused to admit it could be GCA - also young like you - and it wasn't managed aggressively to start with and she is still having problems.
I, too, had 5 years without pred, not out of choice, it was refusal of my GP to acknowledge you can have a problem without ESR/CRP being raised. I often tell people who want to manage PMR without pred that I wouldn't go back - I didn't have to resort to antidepressants but it was pretty depressing and painkillers did nothing.
Irritable bladder or interstitial cystitis is common in PMR and there are drugs that will calm it down - but I'd fully get which you didn't want another tablet! On another forum we used to tell people to get shares in Tena! It is infuriating though.
Here is the link for the contacts for the support groups - Southend?? Not sure what you'd call mid-Essex being from north of Watford and now living in Italy
Thank you PMRpro. Its a true minefield this isnt it. Tena is my best friend, laugh, cough, sneeze you name it. Agree I think I may have gca symptoms too however the worst of the visual stuff seems to be over, it was double vision and tongue pain that sent me flying to gp 4 weeks ago. I have had no loss of vision. Nothing since I have been on the Pred. No scalp tenderness just odd central forehead ache and pain behind eyes but not until after I started steroids. I have had uneven eye pressures for a few years. So going to see my opthamologist next week as he has all my records and has been keeping an "eye" on me and hopefully take it from there. Again thank you for making my last four weeks a bit less worrying with all the good advice. Southend is a 50 min drive so not far but not been driving yet due to brain fog and lack of concentration.
Hi S4ndy, I am surprised you are being given co-proxamol still, I thought it had been phased out in UK due to problems? It is now an unlicensed medicine. Also co-proxamol contains paracetamol so you should be careful taking straight paracetamol as well. I think people are being given co-codamol instead of co-proxamol nowadays, but I may be wrong.
Unfortunately I an codeine resistant, it doesn't work. Coproxamol is still prescribed on a named patient basis with the gp taking personal responsibility but it is harder to source these days as fewer pharma companies are making it. Its a good drug and I have been taking it on and off for 34 years but obviously not with paracetamol. Suspect that in the future it will get harder and more expensive. There's a whole other forum on coproxamol
My mother used to take co-proxamol as if it were smarties! For years. The charity Arthritis Care were really upset when it was phased out and so was my mother! I believe the main reason for withdrawal was because it was associated with a high number of suicides.
Yes teenage suicides plus a high profile government minister. Many gps think the decision was a political one as there is nothing wrong with the drug used properly.
I believe 18% of drug suicides used co-proxamol and 5% of all suicides. I am sure an awful lot of GPs wished it had not been withdrawn. I believe there are now only two manufacturers as of this year, as Cinigen have pulled out. UK withdrawing it meant the EU, US and Canada followed suit. A great pity.
Like a lot of things. The really disgusting thing is that if you want to commit suicide using paracetamol it is still just as possible and it could all be avoided by including the antidote to paracetamol in the tablets. But then you wouldn't be able to buy a pack for 30p in a supermarket. And save them up so no-one knows you are buying them.
I agree with PMRPRO that although you feel your GP is clued up on pmr/GCA, you are displaying a lot of symptoms of GCA. The latest guidelines state that all cases of suspected GCA should be referred to a specialist.
I am the other lady that PMRPRO refers to, who fought for 2 yrs with local Rheumatilogists to take my symptoms seriously. I was only ever allowed the lower doses of steroids for my pmr. I had all the common symptoms of GCA except eye trouble. My tongue would twitch at night, stopping me sleeping. I also still get the pains in my tongue with clots and haemorrhages occurring almost on a nightly basis, which is extremely painful.
I ended up asking for referral to a Rheumy who specialises in GCA and sees many more cases than your average Rheumy. I also seen the Prof in Southend, who confirmed the diagnosis. Unfortunately due to the delay of 2 yrs in diagnosing it is now thought that I am at more risk from the high dose steroids than from the effects of GCA. I have to hope their right that a "catastrophic event is unlikely", and manage the symptoms of GCA with Pregabalin and Amitriptyline for the head pains. I also take Azathioprine to help with taper. I would not wish my journey on anybody, I still suffer daily with head pains, temples burning, and scalp tenderness. Suffering this daily whilst holding down a full time job is challenging.
PET scans have shown symptoms of GCA in patients who have no symptoms, so it has to be properly managed. If you do decide to see a specialist I would skip the local ones unless your fortunate to live near one who has interest in pmr and GCA. Good luck with your recovery, Runrig 😃
Thank you. I take on board everything you say. Sounds like you have had a rough time of it. My GP knows of a good Rheumatologist at Southend apparently so first the Opthalmologist then if I have to see someone else then so be it.
Hi s4ndy.. I have GCA and am under Rheumy at Southend. My personal opinion of the "excellent Rheumatologist and GCA expert" is not good. I am not receiving good care or advice. I am self managing my condition with help from this forum and my GP. If you are in North Essex I would ask for a referral to Addenbrooks.
Sandy, you've already had great advice from others, but I just wanted to add that increased urination is one of the many possible listed side effects of Prednisolone.
However, frequent urination can also be a symptom of diabetes, so do get your blood sugar checked if you haven't already done so. Steroids themselves also carry the risk of diabetes.
The inflammation of PMR itself can also lead to frequent and urgent trips to the loo and certainly that was my experience in my pre-diagnosis days. As the bladder is a muscle it probably isn't immune to being affected similarly to the other muscles in our body.
The good news is that it does improve as the steroids get control of the inflammation and still further as we reduce the dose. You have done the wisest thing in cutting out coffee so one less thing to cause aggravation.
Your head/eye and tongue symptoms do raise the suspicion of GCA, in which case your present dose may be too low. Do ensure that at your eye appointment next week, the optician examines the back of the eyes (the optic nerve) for any sign of anything suspicious. If you are in the slightest doubt at any time, don't hesitate to go straight to A&E.
Thank you. Will do. Again your posts have been helpful on all the side effects of Pred. Blood sugar OK. Think with all the drug changes etc hard to tell what is PMR and what are the side effects of drugs various.
Well done you...I can relate to most of what u r saying and I am not treating my Suspected TA still cleaning up staff infections in Biopsy Scar (moved from scar...to sinus....now to same side ear.....). Will be very interested to see your future posts....😄😄 Hugs
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Good Days Bad Day and Tapering
Fibromyalgia v GCA/PMR
Just been referred to see a Rheumy
Real problems getting back on track with tapering
GCA with normal CRP but high ESR?
