Just Found Forum

[Dazey]

Hello the Forum

I'm a bloke aged 62. Just thought I would share my story.

I was diagnosed with TA in July 2012, after many visits to my local health centre because of recurring headaches, and scalp tenderness. I was checked all over, had blood tests, and even was prescribed an anti-depressant, which apparenty works well for pain (it did not).

I visited the health centre in early July 2012 and saw a very young Doctor who agreed that the A.D.s were not working and luckily as I had not been taking them for too long to come off them. He then questioned me in great detail about my symptoms, especially eye problems and chewing. I then had a thorough examination, limb strength reflexes etc. He then made a phone call and informed me that on advice from the local rheumatology dept. it was agreed that I was suffering from TA. I was put on a dose of prednisolone 30mgs and within four days I was feeling so much better.

I was refered to a consultant who organised a Dexa scan and prescribed alendronic acid and calcium supplements, and a steroid reduction regime. The scan showed some problems but recommended that I have another scan within three years. From July to December my reduction was from 30mg to 7mg and it was over the latter period that I started to develop what I now know to be PMR symptoms. From then on my dosage of steroids has been back up to 20mgs and down to 7.5, now back up to 10mgs. I have also come down from 60mgs artovastatin to 20mgs. I must add I was having regular blood checks during this period

Just lately I have had to take time off work, I am a part time barman, so can't really walk away and rest every so often. Very frustrated as I was quite active up until lately walking and generally charging about the countryside. I am also getting to the point of thinking of finishing my job and looking for another. Thats the story so far.

To conclude on a cautionary note, I was very lucky to get diagnosed as I had been having the symptoms for at least two months previous, who knows what could have happened.

Also as I proceed with my future plans, if I come up with any useful info I will post it up.

Best Regards to all out there

Dazey

[polkadotcom]

Welcome, Dazey, to the place you'd rather not be, but glad you have found us. PMR (not to mention GCA) is a sneaky beast, jumps up and hits you just when you thought you were clear. Perhaps you would be able to stay on 10mg until you are absolutely sure you are comfortable? Reducing too quickly is the main cause of PMR flares and that dose is so close to the amount you would make naturally that perhaps your adrenal gland needs a bit more TLC before it wakes up.

PMR is also a frustrating condition as it seems to hit those of us who were very active previously. Add in steroids and mix it up in the Devil's Cauldron..........

Do post anything you come across, we are always interested.

[tomasina]

Sorry to hear about your problems and you are so young. It is a strange condition and just creeps up on us.

Be kind to yourself. Rest as much as you can.

Good luck with your job search. We are always interested to hear of progress, so keep in touch.

Tomasina

[m33ary]

Thanks for sharing your story. I was diagnosed with PMR at 46 and almost 4 years later still struggling with steroids. I'm pleased you are doing well and will watch your progress. wishing you better

Mary

[Celtic PMRGCAuk volunteer]

Hello Dazey

I can understand why you feel frustrated especially after apparently having such success reducing from 30 to 7mg in just 5 months. It isn't at all surprising that you ran into difficulties leading to a roller coaster ride at that point though as not only have you experienced a very fast reduction over a relatively short time, but your adrenal glands will have been suppressed by the higher dose steroids and need to start 'waking up' again at around that 7mg mark. However that is a slow process and needs a very slow approach with reducing the steroids - the lower you get on each dose, the higher the percentage drop. If you are feeling comfortable on the 10mg dose, then it may help to remain there this time for much longer than you have been doing previously - in the absence of a crystal ball allowing us to see any inflammation still simmering away quietly underneath, it's better to spend longer at each dose at this stage rather than risk another flare.

I am always in awe of you younger people having to work with this horrid disease with a mind of its own - perhaps you can just take a period of sick leave until you feel better? Very best wishes.

[adelle]

Hi Dazey

I was diagnosed with GCA 16months ago. I also reduced to 5mg then it hit me again and went back up to 20mg am now down to 4.5. This has taken me a long time (in my world but a short time for many on here) Celtic certainly has the best advise. I had a week off work when this first happened but have gone in every day since.

I would have been lost with out my job as it gave me the incentive to get out of bed. Yes there are good day's and bad ones I find it is the energy levels that get to me. Still do.

I have just come from the hospital and they have told me to carry on as I am reducing by .05 each month. Blood levels are a bit high but nothing to worry about.

Good luck and reduce slowly. You will feel better eventually its just a long road but we are all there with you.

Adelle

[Dazey]

Thanks everyone for your comments. Will be in touch.

D