My adventures with the beasts

My adventure with "The Beasts of PMR GCA and PREDISALONE" so far.

For the last few years I have had problems with pain in my lower back and hips. This was a long story I was seen by a back specialist put on Amatrytaline and an MRI scan ordered. I was told to watch out for signs of urinary difficulties as this could be connected to nerves in my back and to go straight to AE. A few days later I had big problems early hours of the morning I had pain in bladder and could not pee. I went to AE as instructed they catheterized me and admitted me for tests. This brought the MRI forward. The problem turned out to be Amatrytaline it had stopped me peeing. The back pain had no obvious cause.

I was referred to the pain clinic. I had been doing quite well working through a pain management plan until this spring when my "PAIN NURSE" specialist told me they could not help me. I could not manage to exercise so the pain clinic could not help my pain problem.

That was a shock.

Just over a year ago my Gp referred me to a rheumatologist. I saw the consultant she was very offhand with me I was not with her for much more than 5 minutes then she sent me for bloods and cardiogram and referred me to the eye hospital because I have a dry eye problem.

I was recalled too rheumatology for follow up in April 13 and in the same week I was invited to make an appointment with the local eye hospital. (Yes a year later). I think this might have been due to the fact that I had asked my Gp about these appointments.

This time I didn't see the consultant rheumatologist but one of her team. He was very considerate and gave me time to talk. He was considering pmr but was not sure as my bloods were low but said he would recommend that my Gp try a steroid injection.

I saw the local eye specialist next he found I had plenty of tears but my Blepheritis was bad. No mention of gca at this stage.

During April / May 2013 I had a problem with a large tooth which we blamed for the headaches etc. I spent one and half hours in the dentist’s chair while he tried to remove the tooth and failed. He then tried to order an ambulance to take me to the hospital but the maxio staff had no one to see me. I was sent home with pain killers and antibiotic.

They told me I would be called after nine the next morning with instructions. This didn't happen so I rang the dentist to be told they had sent a fax for urgent treatment for me. If I was in pain had swelling or bleeding I should attend AE as I had all three I went in. the triage nurse contacted maxio to be told there was nobody to come down, so she passed me on to the AE Dr and he got a Maxio Dr to come down to see me. He was surprised I had been left as I had been but could not operate until end of week. So Friday afternoon I spent another hour and a half in the chair they had problems with local anaesthetic as my mouth was still swollen and bruised from first attempt. She managed to get it out in the end Wheeeeee still lots of pain but it was out.

Two days later Sunday I had to attend an emergency clinic as it was infected. They dressed the wound and gave me stronger antibiotics.

Through all of this period I have had swollen gums around the base of my teeth. This started before the dental treatment. I visited my dentist on 4th June he descaled my teeth.

On the 10th May I had an pre booked appointment in Liverpool Royal Infirmary for a visit to the Gastro intestinal measurement Dept. I was having a problem with my right eye so I went to the Eye Hospital in L/Hospital the triage nurse had a look and told me I needed to see one of their Dr’s .The Dr told me I had an abscess and gave me drops she examined my temples and found them to be very tender and I had painful spots she asked me lots of questions and I told her of the rheumatologists suggestion. She told me to ring my Dr and to see him that day and tell him she suspected Gca. I saw a Dr. He put me on 40mg preds and I was told to visit my own Gp Monday. Great I felt better within a few hours LIKE MAGIC.

My Gp ordered bloods immediately but was not sure of the diagnosis as my bloods are always very low esr 3/5mm.So he told me to start reducing preds but that if I had a return of symptoms go straight back to 40mg I got down to 15mg and it came back it felt worse. This was at night I didn't want to take preds because I do not sleep well. I rang my Dr in the morning and left a message with his secretary she rang me back a few minutes later and told me I needed to come in to see a Doctor. I went straight down and he found the tender painful spots on my temples had returned he asked me a few questions then put me back up to 40mg preds and ordered a TAB at the local eye hospital.

5 days passed I heard nothing so on Wednesday I called into the surgery and asked about TAB they had difficulty finding the referral when it had been found it turned out the Dr had not signed it and would not be in until Friday. The receptionist was very embarrassed and got me seen by another Dr. He rang the eye hospital it was left that I would be contacted when they sorted the paperwork. The local eye hospital called me the next day and told me to come up straight away. The Dr I saw felt that as I had been on preds for a month there was not much chance of a positive TAB and even if the test was negative he would keep me on preds. He consulted with his consultant and said I have a classic case of gca. He told me to return to my Gp to work out a plan.

I visited my Gp on 5th June. He is taking GCA very seriously. I was instructed to stay on 40mg Prednisolone to complete 4 weeks (21st June) at 40mg then review dose and if symptoms OK we might drop the level of Prednisolone. He prescribed Adcal-D3 and Alendronic Acid and kept me on Zantac. My sleeping is mixed I think it is connected to the time I take Prednisolone. On days I take it early 5am I get more sleep (up to 7 hours) if I take it after 9am I get much less sleep (3/4Hours or less)

12th June. I did to much. 13th June woke with head and scalp pain and tenderness. In the afternoon I phoned Dr for advice the receptionist told me to come in 5 minutes to see a Dr. He checked my eye sight right eye blurred temple tender. Put Prednisolone up to 60mg until next Gp visit (1 Week) I took 20mg while still with Dr.The pain eased with in an hour.

Audiology appointment to help with severe Tinnitus.

21st June visit to Gp stay on 60mg for 1 more week.

Saturday 22nd June visit to Rheumatologist told me I have PMR he told me a diagnosis of GCA needs raised bloods??????? I checked this on pmrgcauk website

The gca awareness page clearly states some people with GCA and PMR have normal bloods and in the American College of Rheumatology criteria I fulfill the first 3 criteria.

Thank you for reading this I hope it makes sense. It has helped me putting it all in chronological order.

Kind Regards Ian.

5 Replies

  • You have been through the mill! Dentists are not my favourite people to say the least of it and that session alone would have been me out for the count.

    It's so lucky that you have kept your eyesight, that is the one great fear of all those with GCA.

    I'd just like to confirm that not all those diagnosed with PMR or GCA have raised markers. I have both and have never had raised markers, however I am feeling they remain stubbornly at 2.

    As for the pain nurse who said nothing more could be done for you as you were not able to exercise.........I think she needs some refresher courses. I can't exercise either, but I've been able to learn distraction techniques for relief of background pain and that has been so helpful.

    There are other treatments available. i.e. warm pools, acupuncture, and various forms of very gentle massage and she should have been aware of these.

    Have a good look around the website, the information for PMR is sometimes applicable too.

    Best wishes.

  • Hi polkadotcom,

    Thank you for your reply.

    I like the idea of warm pools MMMMMMMMMMM. I will make some inquiries to see if that is available locally.

    Prednisolone 60mg has made me feel much better I can walk without a limp and stairs are not an adventure at the moment.

    Kind Regards IanR

  • Hi ianR

    After reading what you have been through I am never going to complain again. You have certainly been through it. Good luck for the future.

    Good luck for the future.

  • Sorry to hear of your troubles. I have had pmr for over 4 years and I seem to go from one disaster to another. I have had awful trouble with my teeth and have had 8 out and in the beginning always ended up with dry socket infections, I changed dentists and he knew about pmr and gave me anti-biotics to take the day BEFORE the extraction and told me to take it easy for the rest of the day of treatment and since then things have gone well. I have had pain in my lower back and hips but I have also a compression fracture with 3 bulging discs, and have now been diagnosed with osteoarthritis in my right hip and I am in agony, strong pain killers day and night and as you said stairs oh!!!!!! Unless people are going through it day after day they have no idea what it is like. Try and keep going and I will include you in my prayers.

  • Watch for the hip pain, i had it for 18 months before they found it was my hips, they looked at my back and neck and spine and knee and then sent me of to a pain clinic, i kept saying please scan my hip but they didn't, saw a new doctor in pain clinic, got me a scan on hip, day after i got the results i was in for surgery to drill holes in top of legs to get blood flowing into hip bones but it did not work, 8 weeks ago full left hip replacement and a week on Saturday i have the other one done, so if your on high doses of Predisalone for a long time and get burning pain in your groin get an mdi scan,mine did not show up on an ordinary X-ray 6 months earlier.hopefully after this and i will get my life back to being not to bad as i went onto Methotrexate and got down on my steroids and i did not have any side effects, hope you all feel better soon, Mick Bell

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