Just need to vent.

**sacc51** · 1st November 2015, 11:06 AM

PMR?
Back in July I started experiencing pain in my wrists, forearms, elbows, upper arms and neck and so saw my GP. After blood tests he was pretty sure I had Polymyalgia Rheumatica and prescribed Prednisone (steroids) which has some rather severe side effects. Later he revised his diagnosis and gave me a referral to a Rheumatologist who I will see at Xmas for a more definitive diagnosis. It’s pretty rare for PMR to affect the arms/hands but I’m a pretty lucky sort of a bloke apparently.

The condition prevents me from using my hands and arms so I’m now unable to play my guitar, paddle my kayak or work in my workshop to name a few activities. Any sort of activity with my hands/arms causes excruciating pain which usually strikes, not at the time, but later that night and particularly the next morning. The pain has been so severe at times I have been unable to dress myself, brush my teeth, use a knife and fork and at times I have been unable to get out of bed without help. May seem a little melodramatic but believe me it is a very painful condition. I’m one of the lucky ones though there are people worse off than me with this condition who have had it for years/decades.

A month or so ago I was woken at 1:00 am with excruciating pain in my forearms, my wife and I spent the next four hours heating wheat packs and applying them all to no avail so she took me to emergency. The on duty Doctor gave me nothing for the immediate pain excepting a heat pack and upped my steroid dose, the next day the pain had settled.

Unfortunately this condition can be a recurring one and the average recovery time is between six months to two years – according to the medical fraternity. According to the real world (people who actually have the condition) the recovery time is more like two to eight years, many never recover and many suffer recurring bouts .

On the higher dose of Prednisone I’m able to use my hands/arms for up to an hour or so per day but the pain in my wrists prevents me from doing anything constructive: can’t hold a drill, angle grinder, use a file and a hammer is totally out of the question. I can use a welder but can't use any tools to cut and fabricate - so frustrating. If I overdo it I'm back to emergency and a higher dose of steroids, amazing how your life can change so quickly. Now I’ve got to start tapering my steroid dose which can also take years to get off and if you taper too quickly symptoms reappear and you’re back to square one.

With this condition I thought that’s it, life can’t get any worse, or can it. Recently I started to get itchy on my lower back so I went to my GP who messed around for a while with guesses and potions and then sent me on to a Dermatologist. Diagnosis: Uticaria possibly as a result of steroids. Uticaria is characterized by incredible, non stop itching, particularly at night, which results in large weals erupting. I now have the itching and weals all over my torso front and back, back of legs, groin and arms, and as luck would have it this is also a recurring condition which can take many years to resolve.

Over the last two to three weeks I've gradually cleaned up my shed and draped everything with sheets, a very painful process both physically and mentaly. I'm not getting any younger and I fear this condition has put an end to life as I know it, I'm now thinking I may have to start selling off my tools and machinery, no point in keeping them if I can't use them.

I’ve gone off buying lotto tickets!

Just venting!

**BobL** · 1st November 2015, 11:21 AM

Blimey.
Suddenly I felt a whole lot better from the comparatively trivial aches and pains I wake up with in the mornings.
I hope you see some improvements soon.

**cava** · 1st November 2015, 02:32 PM

Try drinking more water.

I write from experience.

**sacc51** · 1st November 2015, 03:15 PM

I drink 2 litres a day, any more isn't good for you.

**Chris Parks** · 1st November 2015, 04:45 PM

Been there and done that with Prednisone but I am sure I did not take the levels you are on. I was not warned of any side effects and had to work out why I did not need sleep and the rest of the longer term side effects. It cost me two cataracts in the long term and I have not had to take it for many years thank god. These days they only prescribe it as a last resort since the side effects became better known. I hope you get better in the short term and can resume your woodworking. I have a friend who has been absolutely debilitated by a mysterious complaint for about five years and within the last few weeks they have found the miracle cure and she is mobile once again so one never knows with these things.

**cava** · 1st November 2015, 10:31 PM

Originally Posted by sacc51

I drink 2 litres a day, any more isn't good for you.

Everyone's mileage and opine may vary on this.

However, as someone who has had similar to what you have described, and even been paralysed. The only thing that really helped me, apart from prayer, was pure water without chlorine/fluoride and vitamins/minerals. Minerals are very important.

The secret to body hydration, is to ingest the water slowly over a longer period. I was even bathing for long periods so that my skin could absorb as much water as possible.

Whether this resonates with you or not, I hope that your health improves and that it all works out for you.

**MAPLEMAN** · 12th November 2015, 09:10 AM

Prednisone is nasty stuff
Gotta be better medication options for you
Avoid it at any cost...please
Wishing you the best health outcomes mate...MM

**Yanis** · 12th November 2015, 01:22 PM

I had almost the exact thing happen when I was about 45, roughly fifteen years ago. Turned out the be the statins that were prescribed. I went off them and within 6 months was right as rain. Turns out to be a very common reaction to statins, and the doctor neglected to actually explain the possible side effects which can be quite disabling if you are affected.

**bsrlee** · 15th November 2015, 01:37 AM

You might want to look around for another opinion or two - one of my uncles suffered from weakness and loss of sensation in his arms and upper body - doctor told him it was arthritis & gave him a bunch of pills. Still had problems, a few years later got a new GP who took a look, ordered an x-ray & found he had cancer along the length of his spine which was compressing the spinal cord and no arthritis. By that stage it was inoperable.

**AlexS** · 17th November 2015, 07:32 PM

I had PMR several years ago. My symptoms were more typical - night sweats, pain in legs & pelvis were the main ones. GP diagnosed it, prescribed prednisone and referred me to the rheumatologist immediately for confirmation. GP's advice was that if it was PMR, the effect of the prednisone would be immediate, and they were. He warned me of possible side effects, but I was fortunate not to have any.
Rheumatologist advised that in about two thirds of PMR cases, they find some underlying infection, but after a comprehensive examination, didn't find any in my case. He confirmed the GP's diagnosis. He continued the prednisone, can't remember for how long now. However, it is important that when you come off it, you taper down, rather than stop abruptly.
Sure, prednisone is strong stuff, but to call it 'nasty stuff' is irresponsible. I found that it worked well. Don't be afraid to quiz your doctors. If they don't like it, find another doctor.

**sacc51** · 15th February 2016, 08:17 AM

Wrong diagnosis, rheumatolist has advised me it's RA not PMR. So far been prescribed methotrexate and steroid injections - no change still can't use my hands. Started on sulfasalazine yesterday. At least I'm having a win with prednisone tapering. Down to 16mgs from 25mgs without problems. We'll see how I go when I get below 10mgs. Wonderful side effects from methotrexate and prednisone: moon face, puffy eyelids, burning eyes, tingling and numbness in feet and lower legs, super sensitive teeth, can just imagine what my liver and kidneys are like. Was life really meant to be this f....d?

**artme** · 16th February 2016, 01:35 PM

Glad to see you managed a second opinion!!

Hope things improve dramatically for you!!

**rwbuild** · 16th February 2016, 02:10 PM

I agree

**MAPLEMAN** · 28th February 2016, 09:45 AM

Originally Posted by AlexS

Sure, prednisone is strong stuff, but to call it 'nasty stuff' is irresponsible.

...I strongly disagree...MM

**MAPLEMAN** · 28th February 2016, 11:03 AM

Originally Posted by sacc51

. Wonderful side effects from methotrexate and prednisone: moon face, puffy eyelids, burning eyes, tingling and numbness in feet and lower legs, super sensitive teeth, can just imagine what my liver and kidneys are like.?

Wonderful side effects

...i'd say very nasty side effects

Wishing you a speedy recovery mate...MM

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