Day patient

Hello again Chisnal

Although I have GCA and PMR, I did not have a biopsy at the outset. Most people who post entries on this site seem to be suffering from PMR only and I'm wondering therefore if you may not get a positive response to your query.

However, the hospital I attend has two very experienced specialist rheumatology nurses who I can contact between appointments if I have any real worries, and I'm wondering if the hospital you attend may have such a point of contact.

In the first instance, perhaps you could telephone the rheumatology department of the hospital you were in to see if they offer this service to put your mind at rest.

Good luck and let us know how you get on.

MrsO

Hi Mrs O

Thanks so much for you reply. Please, no need to go out of your way trying to find out for me. I could do as you suggested but I hate mithering people. I will just look at it as a days holiday from work and enjoy the free dinner (I hope).

Take care and I will let you know

(Linda)

Hi Chisnal

When I was diagnosed with pmr in June 2005, I had a biopsy. It went very fast and I really didn´t feel it. The biopsy was done under the hair, so there is no visible scar. After an hour from the time I came to the hospital, I could leave without feeling anything. I just had a bandage at my left temple. I had GCA. The day after, I went to the US for the 50th class reunion of my high school class in Minnesota. I was an exchange student in 1954-55. My wife helped me to cover the scar with surgical tape that was skin coloured, so the bandage wouldn´t show on the class picture. A week later, while driving around in California, my wife took her Swiss army knife one evening and used the small scissors to cut the thread. She had dipped the scissors in gin from one of those small bottles you get on long distance flights! The biopsy was really nothing.

Since the middle of December I am free from pred and feel fine. When I came to 5 mg I took it very easy and tapered just 1.25 mg every month or so, but it took me a year to come below 5 mg. Then I tested a regime where I took the new dose one day, the old dose two days and repeated this once more. If you want to drag it out even longer, you can alternate the new dose and the old dose for another week or two after the first week. I think that when you are at a dose below 5 mg, you can take it easy and have a better quality of life rather than rushing to get off pred. The side effects are very low, it seems.

Good luck

Ragnar

Hi Ragnar

Thanks for your reply. I had biopsy under local 3 weeks ago and I would hate to go through it again. Should have taken 10 minutes but took an hour. Anesthetic didn't work too well. At the moment I am on 60mg steriod and the weight gain is driving me crazy so I can't wait to reduce them. I have to go to hospital for a full day on 21st April so Just wondered what tests they will do on the day. I haven't had the results from the biopsy but my GP said the hospital appointment sort of confirms that it will be GCA. It is reassureing that you are free from steriods and I am really pleased for you. Hope you stay pain free. Success stories are a life line!

Hello again Ragnar

You've really made my day - I had assumed that you had been suffering from PMR rather than GCA.

I have both PMR and GCA. Having been lead to believe by one consultant that GCA is more problematic than PMR in coming off steroids successfully and that a small maintenance dose would be required for life, I now hear that your successful recovery was, in fact, from GCA. So you can see I've had a terrific morale boost from reading your entry today.

Having just had to increase back up to 5mgs from 3mgs, I now aim to follow your regime of reducing on an alternating basis this time (that is assuming that my blood tests will be back to normal at my next hospital appointment in May).

It's really good to hear from you again on this site as a recovered fellow sufferer - a great boost for us all, and long may your good health continue.

MrsO

Maybe I didn´t make myself clear that I had both pmr and GCA, so I have recovered from both.

Ragnar

Thank you Ragnar - you're the first person I've come across to have suffered from both PMR and GCA like myself - that's given me a real boost!

Mrs O

Hi its Chisnal_1944

I too have been diagnosed with PMR and GCA. Been on 60mg Steroids now for about 3 weeks. Got to stay on 60mg for 6 weeks. I have an appointment to go in for more test as a day case next week. I cannot believe how rough I feel at the moment. Pain free yes but, tired, sick, depressed, (not to mention feeling fat and ugly) and to top it all, tried swimming and came home with an ear infection. Apparantly the steroids fight your immune system? I have been told that 60mg is quite a high dose. Does anyone know to what level of steroids I need to get down to before I start to feel a little more normal?

Chisnal (Linda)

From my experience with PMR and GCA and starting at a dose of 40mg, it took a couple of months and reductions in the dose to start feeling, as you say, more \"normal\" but then I had been really ill before diagnosis with vomiting, weight loss and dreadful head/jaw pain, let alone the PMR body pain. I also had difficulty focusing which made me feel light-headed for some time.

Everyone is different, but one thing for sure is that you will soon start to feel some improvement with some days better than others, and if you have already found the incentive to actually go swimming then that is good sign.

For the depressed feeling, from my experience just trying to go for walks, no matter how small, is something I find a great help. I know the weight gain just adds to the depression but I've tried to stick to a low-fat, low-carbohydrate diet, even though the very thing you want to do is tuck into the biscuit jar to cheer you up! Also, I have oily fish several times a week, such as sardines, mackerel, salmon, as these are anti-inflammatory foods and should help with getting the blood tests back down to normal. I love chocolate and have continued to have one daily special treat of a few squares of organic dark chocolate! Naughty, I know, but you really do have to give yourself a treat of some sort!

For the sickness, have you tried a daily live fat-fee plain yoghurt, preferably in the morning with breakfast before you take the steroids. It lines the stomach. I have found this invaluable as I had bad stomach side-effects from the stomach lining tablets they put you on (Lanaprozole and Omnaprazole) so was unable to take them. So far, the yoghurt appears to have served me well for the last two years plus on Prednisolone.

As for the tiredness, this is something everyone contributing to this site complains of, and it seems the advice is to just \"go with the flow\" and rest when you feel you need to.

I do hope this has been of some help and, hopefully, someone else out there will be able to add their reassurance as to the recovery time whilst coming down on the steroids.

Good luck on the 21st.

MrsO

Hi Mrs O

As usual you are so reliable and informative. Thank you for the advice I am taking on board everything you say. Think I may have gone a bit far with the swimming, its since then that I feel ill, tried too hard too soon I think? I am fininding things a little difficult talking to my partner about my problems. We have only been together 16 months and in that time I can't help thinking he is wondering what on earth is going on, once slim, laid back and placid to a bit of a stranger!. He also nursed his wife through a terminal illness and I don't think he tolerates illnesses in other people too lightly so isn't easy to talk to. So this site and people like you are a bit of a life line for me at the moment.