medication

Bones, joints and muscles
1

hello again.

i have to see my doctor next week about my latest 'esr' reading taken this week. it has gradually been increasing, and the test before was at 38. he is i know reluctant to put me back onto steroids, because of the problem i have had with inflammation of both legs, and subsequent nerve damage. is there an alternative to steroids that i can suggest to him?. last week he said no. but i remember reading on this forum that some people take a different drug. thanks in advance for any info. margaret.

2

Hallo Margaret e.

I think the drug you mention as a possible alternative is called mexotrethate. I know it is use by Rheumatoid arthritis sufferers but cannot tell you much more. Eileen will be able to tell you more. There may be reasons why your Doctor thinks this drug may not be for you. I would ask him, I think. He must, suerely know about it. Best wishes BettyE

3

Hi Margaret e!

Betty obviously has great faith in my abilities :oops: but I don't know very much about the use of methotrexate for PMR other than it has been used occasionally with some success as a steroid-sparing measure (i.e. to reduce the amount of steroid needed). The question that springs to mind is whether the success stories are in patients with a mixed presentation i.e. who show symptoms which could be assigned to a variety of ailments - but I suspect lots of us might come under that heading!

However, MrsK has posted briefly about methotrexate because she knows 2 people who do well with it. The post is about halfway down this first page on the Experiences, scroll down to find it and maybe do what she suggested there and contact her directly for more info. On the other hand - I bet she'll be around later and tell you that herself! :lol: What a woman - don't know where she finds the energy!

The other question is: have you got symptoms (sorry, can't remember your history on here)? And are they increasing with the increasing ESR? I have posted recently that there is no definite link between the ESR level and the symptoms so there is no real reason to be on steroids if you have no or few symptoms and you feel OK. The steroids are to CONTROL those symptoms (they're not CURING anything)and providing with PMR you are not showing any signs of temporal arteritis (severe headache, jaw pain, visual disturbances etc) there is no reason to go back onto steroids just because of the ESR figure. It could be something else putting it up - it's is absolutely non-specific, even a cold is enough. On the other hand - if you're suffering, trying methotrexate might be worth a go although I think it takes some time before it starts to have an effect.

cheers from a VERY cosy northern Italy (nearly 35C in the shade!)

EileenH

4

Hello Margarete

Yes, there is another drug and Eileen is correct it is Methotextrate. But it is not given lightly and you need to discuss it a Consultant Rheumatologist as your GP would not prescribe it.

If you can, go to the website www.pmr-gca-northeast.org.uk and under useful information read the guidelines issued by the British Society of Rheumatologists on the treatment of PMR. It is a lengthy document and other medications are mentioned. But please remembers none of them cure pmr - there is no cure. They alleviate the symptoms. ESR rates are a guideline and if you are not experiencing great discomfort which makes your days hell, then there should not be a need to increase the dose just because the ESR rate goes up - it can go up, short term for other reasons and as you mention you are having problems with your legs etc, is this problem caused by the pmr or for another reason.

Disease of the Nerves and Nerve pain are very rare side effects and I wonder if this has been properly diagnosed.

You really need to have a long conversation with your GP.

What I would do is ask for the last appointment of the day (then you are not holding anybody up behind you and you will not be agitated about the time you are taking).

Write down everything you want to ask and take a friend with you so they can remember what was said and not said, as we can all get flustered.

One word Methotextrate is a chemotheraphy medication - but it has been used successfully in getting the steroids down, but from what I gather you have to be on below 10mg before you can take Methotextrate and as usual it comes with side effects.

Good Luck and remember the GP should be on your side and prepared to listen.

5

thanks for the replies, i will wait and see what the consultant says when i see her next. it will be good to have the name of the drug though just in case i need it. i spoke to my doctor yesterday and he says more or less what mrs k, has said, that other things can cause the 'esr' levels to go up. i seem to be around 38 at the present time. i can manage at this level, but have to go and see him if i begin to feel very unwell.

my mobility is poor, i can only walk a few yards now, and my sight is still poor as well. at times when i have a 'temple' head ache it worsens, so i take care, and rest when that happens.

my daughter and her partner are staying with me, as their house has flooded, and been completly demolished inside, ready to be rebuilt. so i have good company.

they suddenly decided to get married, and are planning on july 12th' hope its a good weather day. putting my order in now!! margaret e.

6

As others have said, Methotrexate would be one of the last meds to try. There are several side effects. It's often used to treat RA. Here's a copy of what I read on 'Drugs-dot-com':

What is methotrexate?

Methotrexate interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells, and skin cells.

Methotrexate is used to treat certain types of cancer of the breast, skin, head and neck, or lung. It is also used to treat severe psoriasis and rheumatoid arthritis.

Methotrexate is usually given after other medications have been tried without successful treatment of symptoms.

Methotrexate may also be used for other purposes not listed in this medication guide.

Important information about methotrexate:

You must use the correct dose of methotrexate for your condition. Methotrexate is usually taken once or twice per week and not every day. Follow the directions on your prescription label. Some people have died after taking this medicine every day by accident. Ask your doctor if you have any questions about your dose of methotrexate or how often to take it.

Methotrexate can cause serious or life-threatening side effects on your liver, lungs, kidneys, and bone marrow (immune system). Do not take this medication in larger amounts, or take it for longer than prescribed. Follow the directions on your prescription label. Do not use methotrexate to treat psoriasis or rheumatoid arthritis if you have liver disease (especially if caused by alcoholism), a blood cell or bone marrow disorder, or if you are breast-feeding a baby. Methotrexate can cause birth defects in an unborn baby. Do not use methotrexate to treat psoriasis or rheumatoid arthritis if you are pregnant. Use an effective form of birth control, whether you are a man or a woman. Tell your doctor if you or your sexual partner become pregnant during treatment.

To be sure methotrexate is not causing harmful effects, your blood will need to be tested on a regular basis. Your kidney or liver function may also need to be tested. Do not miss any scheduled appointments.

There are many other medicines that can interact with methotrexate. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor. Keep a list with you of all the medicines you use and show this list to any doctor or other healthcare provider who treats you.

Before taking methotrexate

Do not use this medication if you are allergic to methotrexate. Do not use methotrexate to treat psoriasis or rheumatoid arthritis if you have:

* liver disease;

* alcoholism or cirrhosis of the liver;

* a blood cell disorder such as anemia (lack of red blood cells) or leukopenia (lack of white blood cells);

* a bone marrow disorder; or

* if you are breast-feeding a baby.

Methotrexate is sometimes used to treat cancer even when patients do have one of the conditions listed above. Your doctor will decide if this treatment is right for you.

If you have any of these other conditions, you may need a dose adjustment or special tests to safely take methotrexate:

* kidney disease;

* liver disease;

* lung disease or pneumonia;

* stomach ulcers;

* any type of infection; or

* if you are receiving radiation treatments.

FDA pregnancy category X. Methotrexate can cause birth defects in an unborn baby. Do not use methotrexate to treat psoriasis or rheumatoid arthritis if you are pregnant. Tell your doctor right away if you become pregnant during treatment.

7

I was diagnosed with PMR last December and was put on Prednisolone. I had a very bad reaction to it so I was changed to Deflazacort which is also a steroid but not used very much probably sue to it's cost!

I had no problems with the Deflazacort other than the fact that 6 months down the line my ESR is sitting at 70 so the steroids have done nothing to reduce the inflammation! I was also diagnosed with Fibromyalgia in April and it's taken over my life and I've been housebound for months. I was referred to a Medical Consultant for a second opinion and he agrees with both diagnosis but has arranged for me to have a CT Scan on Wednesday to see if there is anything else causing the inflammation.

Last week I went to my GP and just totally broke down and said I could not go on like this for much longer. He said he would phone my Rheumatologist an ask if he could see me before my next appoitnment in August. Believe it or not my Rheumatologist phoned me 2 hours later to ask if I could manage to get to the hospital to see him that afternoon! He prescribed me Gabapentin for the Fibromyalgia and it has been fantastic. My leg pain has almost gone and I only have the shoulder and upper arm pain which is probably from the PMR. He took blood to test my CRP and liver function and he phoned me last Wednesday to say that the CRP was also high and he wants me to come off the steroids and go on to Methotrexate. I'm really worried about the side effects of the Methotrexate and am hoping it won't undo all the good work the Gabapentin has done. I'm rattling with pills just now as I'm on Deflazacort, Tramadol, Gabapentin, Adcal D3, Omeprazole and Amitryptiline to help me sleep! I have to be weaned off the steroids but I'll post about my experience with the Methotrexate so it may help anyone else who is having to go on it.