Had PMR and GCA 18mths. On pred and methotrextae. Very resistant to treatment. To start I.V. Cyclophophamide soon, any one else had this ?

[spotshouse]

I am not a health professional, but I can share my experience. I am not able to take prednisone as I get too many side effects even at very low dose. My doctor is managing it by giving me shots of solu-medrol every 6 weeks or so. I can tell when it's time for another shot. Not sure if that would help, but it did me.

[Hidden]

Hi spotshouse, thank you very much for your reply. I am not a health professional but was diagnosed with PMR and GCA 18mths ago.

I will be staying on oral prednisolone tabs and methatrexate until I see impact of cyclophosphamide. However it is useful to know that pred can be given by injection. Once again, thank you for your help.

Maryjayne

[Bell4796]

hi maryjane,how long have you been on the methotrextae as i started on it late December,after being on prednisolone for 18month i am now down to 10 mil of prednisolone and 20 of methotrextae at the moment but having lots and lots of pain,just wondered how long before it usually kicks in,hope the other works for you

[Hidden]

Hi Bell, I started methotrexate Oct 2011, gradually getting to 25mg dose. During this time I was trying to reduce dose of pred but on 2 occasions ( once when I was down to 15mg and then 20mg ) my GCA symptoms came back rapidly i.e. blurred vision, tender scalp, odd temporal pain / sensations and stiff / aching jaw so I was back to the 60mg dose and then gradual reduction.

In March Leflunomide was added but I could only tolerate for 5 days, hence I.V. treatment of the C'mide.

Regarding pain, I have always taken Amytriptyline 20mg at night as this has helped reduce shoulder / upper back / arm pain, it also helps me sleep as the steroids tend to keep me awake.

Most of the time my arms are quite stiff on awakening and loosen up after steroids have kicked in.

On a couple of occasions when I have had a lot of pain and stifffness in pelvic / thigh area I had a couple of accupuncture treatments at our local NHS physiotherapy dept, I found that this had a good effect very quickly.

My PMR and GCA has been pariculary difficult to manage, I have been "yo - yoing" The main aim is to get me on a lower dose of pred but without risking my eyesight.

I hope this has been of help, I think these illnesses effect people in so many different ways and it can be difficult to find what suits you.

I try to keep busy as much as possible but I also now make sure that I take the rest that I need. Although G.P. has prescribed stronger pain killers, if I do need extra pain relief I usully just take paracetamol.

Regarding the I.V. treatment, I had first dose yesterday and the next one in 2 eeks so it is a matter of watch this space...

Best wishes and I hope you find a way of managing the pain soon.

Maryjayne

[Sharonsspot]

The groin pain (girdling) was the first symptom that diagnosed me. Woke one day unable to lift arms or feet. When you have a reduction and the pain doesn't settle, then you maybe reducing to fast. If you take the shots and it helps I wonder if it just masking the reduction symptom and eventually will have to increase the prednisone to get off the injections.

Sharon

facebook.com/#!/Polymyalgia...

[m33ary]

I'm having the same problem, on pred 15mgs and methotrexate 15mgs but still have a lot of pain. I'm having a ultrasound next week of shoulders and thighs to check inflamation in both. you are not alone. I was diagnosed 3 years ago. I will let you knoe the outcome and what the rheumatologist suggests! wishing you better

[Hidden]

Hi Maryjane I was diagnosed July 010 with PMR starting on 40mg pred. Within a month I had developed GCA. I started on cyclophosphamide straight away. I had one dose every month for six months. The first two I had terrible headaches for several days,and feeling sick. But within two weeks I felt ok and ready for the next dose. The treatment so far has been successful and GGA is dormant. I still have PMR I'm on 5mg pred and feel well. Having chemotherapy was bearable I didnt lose my hair, it's not for ever and successful for me. Get plenty of rest, stay strong. All best wishes.

Mossie.

[Hidden in reply to Hidden]

Hi Mossie, thank you very much for your contact. My cons at the hosp has reassured me that he has had success with a couple of other people but it is really helpful and encouraging to hear from some one whose GCA is dormant and maintaining on a low dose of steroids. Today was my 3rd treatment, having 1 gram every 2 weeks

but staying on Pred 20mg until review after 6th treatment. Apart from the headaches and increased tiredness the chemo has been o.k.

Once again thank you for the message it has really helped me feel more hopeful. Best wishes.

Maryjayne

[Hidden]

Hi Maryjayne. Just a quick line I would think by now you have had the cl.mine treatment and was wondering how you were doing. I went to the PMRGCAlk meeting in London I was chaired by Kate Gilbert. She was very good and works hard bringing our condition to the fore, see her letter today. Look forward to hearing from you and hope you are well.

All best wishes. Mossie

[Hidden in reply to Hidden]

Hi Mossie, completed course last week. Now on a very slow reduction of pred. The chemo was tolerable I did develop lots of headaches but main side effect is the extreme tiredness which I hope will reduce soon. My main concern is to keep eyesight safe without becoming too neurotic about it !

How are you ? its good to hear that 5mg of pred is sufficent to keep your symptoms at bay.

Hopefully I will be able to attend PMRGCAuk meeting in London in the future and I shall read Kates letter.

Did you find the day useful ?

Thanks for your support I shall keep in touch.

Best wishes

Maryjayne