Prednisone sparing drugs

[Asbeck]

I have been diagnosed with GCA & PMR. I need to sign up in the US for Medicare, the old age insurance. Different plans pay for different drugs. I see my Rheumy 06-30-14, which is too late. I have been told to consider Methotrexate. I will have a plan for a year. Apparently you make a list of potential drugs and then find a plan that causes you to pay the least for such drugs. mickt has named Cyclo and rituximab. Are these prednisone sparing drugs? Do any of you know of others? So far I don't need many drugs other than the ones used for these diseases.

[Runrig01]

I was prescribed Azathioprine in Feb, as for the 12 months prior to this I was stuck between 10-8 mgs of Prednisolone. I was stuck mainly to developing GCA type symptoms when I tried to reduce. I have atypical PMR, I also have burning temples, tongue pain including discolouration and spasms some nights. My jaws cramp when eating food that requires effort and I have pulsatile tinnitus in left ear and pains and tenderness behind the ears. I have managed to reduce to 6mgs since starting Azathioprine, the head symptoms are still there but this time the are not getting worse when reducing, so do find it helpful. My PMR pains have worsened slightly, struggle with stairs and bending, and right shoulder constantly feels cramped since reducing to 7mgs. I do feel that I have progressed further than I would without the Azathioprine, hope this helps. Regards a Runrig x

[polkadotcom]

Methotrexate is the most used steroid-sparing agent here, but azathioprine and cyclosporin have been used. There has been/is a trial using leflunamide which has had some good results, but unfortunately it is a matter of 'try and see'. What suits someone else may not suit you at all, it is a very individual reaction like most situations with these conditions.

They are also trialling tocilizumab with good results, but it is very expensive and I doubt will be much used. In theory most of the DMARDS used for RA could potentially be used as a steroid-sparer so you could research RA sites?

[mickt]

I was on azathioprine ,got rashes so on methotrexate now 25mg weekly injection.Still on 30mg pred got to have more cyclo 6 infusuions already had 6 finished last nov,Also got to start warfarin as borderline Hughes APS.The metho and the cyclo are steroid sparing drugs .Ive had 2 flares in eyesight within last month ,so im grateful to medics for admitting me for 2 nts to get iv meythl pred.I still feel knakered tho would love to get more strength from somewhere,started gentle swimming which I feel better after.Rituximab was mentioned for me but docs have decided against because my immuglobin levels are low and apparently ritux sends them lower.More prone ti infection.

[PMRpro Ambassador]

Methotrexate is the most commonly used "steroid sparing drug" in PMR but there is little evidence that it or any of the others make a significant difference to the overall amount of pred required. One or two doctors try azathioprine but none of them replace pred in GCA and PMR and it depends on the person - one might work for one person, another for another.

As far as I know, cyclo and rituximab are not used in GCA and PMR, and both are relatively expensive compared to pred which literally costs pennies, I would expect rituximab to be very expensive since it is a monoclonal antibody. I believe Mickt has a complicated clinical situation - he is being treated for other things besides PMR and GCA and that makes a difference.

Few of us are in the US and the cost of our drugs is fairly immaterial - you get what is approved and appropriate for your illness. Steroid sparing drugs are normally only introduced in GCA and PMR when the patient has difficulty reducing their pred dose. I imagine though that most insurance plans will have a list of the medications that are approved for a given diagnosis - and as I say, in PMR and GCA the only proven drug is one of the forms of corticosteroid: methyl prednisolone, prednisolone or prednisone.

[Asbeck]

Thank you everybody. This is very helpful. Prednisone is very cheap here. I know that I need it. I'll check out the cost of these various other drugs on the various "plans." I suspect that if I get any it will be methotrexate. I think that I'll also need some drugs to assist my bones. And maybe some minor type II diabetes drugs. The last 2 items are from the prednisone and not the diseases. Sigh. But having all of you is very, very helpful. I would have never heard of the names of these drugs without you. And apparently I have to choose a plan for a year in advance, without having had the drigs prescribed. Thank you again.

[PMRpro Ambassador in reply to Asbeck]

By no means everyone who takes pred develops pre-diabetes and it can often be avoided by restricting carbs. In the UK we are supposed to have a dexascan to see if bone-protection drugs are needed and often the basic offering is just calcium/vit D supplements if the dexa is OK. I have never taken anything more than that in 5 years and my bone density is unchanged from pre-pred.

What a crackers concept - who knows what medications you MIGHT need! I suddenly needed medication for atrial fibrillation - out of the blue.

[Asbeck in reply to PMRpro]

LOL. It is a crackers concept. Probably I'm a little anal retentive to try to anticipate. But it could save me quite a bit of money. I did get type II diabetes from the prednisone. But since I am no longer on the 60 mg, 40 mg, etc. doses, it's getting better. Nobody worried about my bones. My family doctor told me to go to an endocrinologist for the diabetes, and he went crazy over worry about my bones. I see specialists, but I think that somehow I didn't get comprehensive care for not only the diseases but the possible side effects of the prednisone from the beginning. But it seems that I have it covered now. On here I read about osteoporosis prophylaxis and bisphosphonates and asked the endocrinologist about it. He x-rayed my spine and ordered some tests. I'll see him soon. He was angry that I had not been referred sooner. Now (until I get Medicare) I can simply see any doctor I want. (This costs a fortune in insurance--$1,400 US a month.) I just didn't know...... You all are helping me very, very much. I now know because of you. Thank you. PS I've paid for this insurance for years and never was sick so I didn't use it. I guess I'm getting my moneys worth now.

[PMRpro Ambassador in reply to Asbeck]

An ordinary x-ray won't show bone density (unless it is so low you are about to crumble) - it has to be a dexascan (dual energy x-ray absorptiometry).

I don't know - we hear so much from people in the USA about the wonderful standard of medicine you have but the evidence of my ears and eyes doesn't match up! Your PCPs seem very unsure of themselves, to the degree of ignorance sometimes. In Europe the PCP will provide stuff like pred and the bone protection meds when they are reasonably sure about a PMR diagnosis or after a specialist has made that decision. And whilst there are things we don't get - we also don't get bankrupted when we have something but no insurance for it. $1,400/month would be an awfully large percentage of most people's pay packet!

Good luck!

[Asbeck in reply to PMRpro]

It is too much to pay for insurance. When you are not working in a large company with many employees, then as you age, your premium increases astronomically. And you do without many things in order to pay it and keep the ins. We tend to get (more) diseases as we age. So going without ins. is very dangerous. That's one of the reasons for the new health care law--Obama Care. You may have to pay, but you can't be denied the insurance. Yes the doc was looking for tiny fractures in the spine. I'm having the real bone density test today. My last one was in Jan. 2012. So we have a base line with which to compare. When you get to the right place the medical care here is extraordinary. For ex: If you have cancer and go to Texas Anderson Medical Center then you get the latest in care. You really do have an extra special chance of surviving. And pretty much everywhere you don't have to wait for diagnostic tests. I waited only 9 days to have my temporal arteries biopsied. But I'm not sure that there is a set protocol that is followed when a disease is diagnosed. Or maybe my Rheumy missed it. Or maybe he was testing for it himself. He may have given me a bone density test at diagnosis. He wrote osteopenia on my papers and I did have some x-rays and maybe lay on a bone density machine in his set of offices. I was so shocked about the diagnosis that I was not thinking clearly. Oh well. Now I have the endocrinologist guy. He's unpleasant, but I think that he really wants to help me and he's supposed to be renown. Then in August I will be on Medicare (former Pres. Johnson's old age ins.). It was supposed to coincide with an age 65 retirement from working--leaving the big corporation which paid for the ins. Medicare will pay 80% and (if I want) I can buy a supplemental ins for about $550 a month. Then 100% is paid. Then former Pres. George W. Bush added the drug benefit to Medicare. Drugs are reduced in price. Different "plans" reduce some drugs more than others. Now Obama Care is lessening the money given to Medicare and using it to provide more insurance for people with low incomes-Medicaid. He's also trying to make young people pay more and old people pay less. Many young people object and don't want ins. We are in a state of flux.

[mickt]

Your right pmr pro,ive been told on numerous occasions that I have a complicated clinical situation.Im hoping the cocktail in going to be drinking will work .

[jinasc]

mickt

It is essential that when you are answering a posting that you explain you do not just have PMR and GCA. This site is not like the other one you use where it has a personal profile, which you fill in (not obligatory of course) which is shown on all postings. This is provided to enable people answering a post to be aware of what illnesses you are suffering. That information can make a great deal of difference to an answer.

[suzy1959]

I was on Methotrexate for 6 months last year with absolutely no effect. I have been put on Leflunamide since January and it looks as if it might be working, but I'm waiting for this month's blood test to confirm that. Prof. Dasgupta has told me that 80-90% of his patients on this have been helped, so I am hopeful. He told me that otherwise, the only option worth considering would be Toxcilizumab ( spelling?) for which he would have to apply for special funding!

[trish29 in reply to suzy1959]

Hello Suzy1959 .. I was on methotrexate for a few years a long time ago for my PMR

[trish29 in reply to trish29]

Sorry Suzy I will continue . as I said I was taking Methotrexate for a long time to try to get down on the Prednisolone but it effected my liver and I had to come off it . I don't think I was given regular enough tests while I was on it. I have to see my Rheumatologist in a months time and I have got nowhere in front since seeing him at Christmas ..I've had everything thrown at me as well as the normal PMR - Flare- ups /Viruses and Dental problems which ended in a tooth extraction yesterday , I am now hoping that things may settle down.. My Question to you is how do you take the Leflunamide ..I believe this is a medication that I may be tried on as the Amitriptyline didn't help me to reduce ..Do you take it in tablet form and have you any side effects .I hope you don't mind me asking. trish29

[Trenny in reply to trish29]

Re Leflunomide. I have been on this since ?Jan and haven't had any side effects that i have noticed. I was started on 10mg, which I took every evening about 6pm. Last week the rheumy put me up to two x 10mg daily which, she said was the standard doseage. I have monthly blood tests. Am currently reducing Pred. from 12.5mg to 11.5mg by the slow method. I was diagnosed in Feb 2013 with GCA.

[trish29 in reply to Trenny]

Hi Trenny .. I am very interested in the leflunomide .. It was one of the extra options on my Rheumatologists list of things to try for me as I can't tolerate Methotrexate , I see him on the 18th June so I will hopefully have got this latest Flare-up out of my system and maybe down an extra Img on the Prednisolone. I'm pleased it is working for you. I am feeling a little better this morning after my injection yesterday so I have to take things easy for a few days . I hope you have a good day and a lovely Bank Holiday Weekend. trish 29

[Trenny in reply to suzy1959]

Where is Prof. Dasguta based? Several people have mentioned him.

I have been on Leflunomide for ?six months - 10mg, daily - but it has just been increased to 20mg daily as my (new) consultant said that 10mg was really only half the recommended dose. I am not really happy with this as I can't see what good it is doing. I developed GCA in Jan 2013 and am down to 11.5mg Prednisolone. In view of Leflunomide being a steroid sparing agent, I am very tempted to start to reduce to 10.5mg next week (by the slow method). Then reduce in 0.5mg stages thereafter.

Is there anyone else on Leflunomide out there?

[suzy1959]

Hi, Trenny, Prof. Dasgupta is in Southend and works in the NHS and privately, charging £90 for a consultation. Depending on where you are it could be useful to see him for a one off consultation to get your questions answered. I have found my local Rheumys rather useLess when it comes to my particular PMR journey particularly as I have had a number of horrible flares and struggled to get anywhere below 10mgs since Dec. 2012. I will be seeing the Prof. on Monday, and I am hoping he can confirm that the Leflunomide is working because my last blood test showed some reduction in CRP and a significant drop in ESR to below normal levels for the first time ever.