Could I have had PMR for a number of years and not known about it?

That is such an eye opener. . . .  strange how we read things over and over again but yhey dont regsister, then bang, you see it.

I'm on about having two problems, i.e. pmr and OA, the pred deals with the one but expossses the other.

Having been threatened by my Rhumi consultant that I would have to go mtx as I was stuck on 10mg of steroids. I had a revolt, not wanting two medications. 10mg kept me happy all round but 8mg has exposed something else. My guess is that thee OA in my lower back is now demonstrating its own symptoms and pain.

So maybe fighting having a second medication and keeping the steroids up is not such a good idea. Maybe lowering the steroid to cover the pmr and having mtx to cover the oa would be a better route.

So much to think about, so many decsions to make 

Um - David, mtx doesn't do anything for OA, osteoarthritis I assume you mean. The mtx is felt by some people to increase the action of the pred so you can manage with less to get the same effect. If someone actually has misdiagnosed RA - rheumatoid arthritis - then the mtx may help there but otherwise there isn't a lot of study evidence to show that mtx does allow a sustained reduction of pred: I know 2 ladies who took mtx and were initially able to reduce the pred but then had major flares and were back where they started. It was suggested for some years that mtx be used for patients who struggled to reduce but the most recent thoughts actually say DON'T use it. 

If you have OA then unless it is in a joint that can be replaced there isn't yet a lot to be done with medication. Except there IS a new topical medication (whose name escapes me at the moment) which I know several people have used successfully - it's a bit like WD40 for joints! I'll try to find it.

On the other hand - I was told my lower back pain was due to wear and tear (i.e. OA) and there was nothing to be done. Changing the diagnosis to myofascial pain syndrome and treating THAT has left me pretty well pain-free. That might be worth a thought.

Good afternoon,

I feel that I have intruded in your conversation with gladioli30, so I do apologise.  I was diagnosed with PMR last November, and soon after asked the forum some questions which they kindly replied, and were a great help. I started on 15mg prednisolone which was great, but definitely put on weight which was probably my own fault. I was at the consultant yesterday, and explained that I was so terribly tired, and had no interest in anything at all. I sit mostly reading, and it is an effort to go out even for shopping. He asked me some questions about my steroid intake, and I explained that when I feel better I drop the dosage, and am now at 8mg. He told me that this was certainly not the way to do it, and to stay on each drop for abour four weeks. I will definitely do that now, and just wondered if you have anything to add. I would love an elixir (as no doubt would everyone) to just give me some energy.

Kind regards,

Grace

Eileen, so true....my body had become intolerant to exercise, and I used to love to move my body and run to feel better which helped still 3 years ago.  Terrible what the illness does to the body.  I have stairs in my house which I have to manage every day.....I may have to make a change from a townhouse with 2 sets of stairs to an apartment.

Your insights help, so does your guidance.

Erika

Personally I never find it an intrusion - we all have something to chuck into the mix! This should be a conversation - and it used to be with the old format. Now you have to look all over the place!!

In the reduction I suggested I did say originally that there was no real need to hang around at a dose if you still felt OK because it had already been spread over about 4 weeks - but I did add another post a bit back to suggest that at lower doses spending a month at each dose was a good idea to let your body catch up. About 10 and again at 7 and 4-5 seem to be sticking points for many. Our bodies normally make the equivalent of 7-8mg of corticosteroid, maybe a bit more or less. So once you get to that realm your body is having to wake up and start making its own again - it takes time to settle down. It is felt that it takes a good year for you to get back to "normal" after you stop taking pred longterm - it isn't that different beforehand as you reduce either.

To be at 8mg in 9 months is fast. The Bristol group leave you at 15 for 6 weeks, 12.5 for 6 weeks and 10mg for a year - using their scheme you would still be at 10mg for another 5 or 6 months - you're way ahead of yourself!

Are you sure you are not depressed? Having a chronic illness of any sort is very hard - your life is turned upside down - and when your friends and family don't understand it is even worse. We can offer a lot of support on the 3 forums but it still isn't the same as having a real-life person to talk to who also knows what you feel like. Or being able to go to a support group meeting. Maybe a chat with your GP might help? 

And resting BEFORE doing something means you have a bit more energy to devote to something nice. I'm a filthy pig - my house is dusty even now I am at a lowish dose of pred! I do what I WANT to do and save the yucky bits for next year ;-)  Every so often we get a cleaner in - bless her she accepts my dust very well!

My PMR went haywire after about 5 years - just after we had moved to a smaller house with only 1 bathroom after years of houses with a toilet on every floor and that meant doing the stairs several times a day. I was literally on hands and knees going up and could only go down like a toddler! I managed to get here to my appartment in Italy - a lift to the second floor and all on one level! Bliss - and it meant I could do so much more outside! Now I manage the stairs and only use the lift to go to the basement or when carrying things. I couldn't face a house on 3 levels though ever again!

HI again, Muirkelsi ~

I agree with Eileen regarding depression.  I've been in chronic pain for over 10 years now and it's excessive enough I had to retire early.  It wasn't until approx five years into my situation that I finally got to the bottom of the cup and asked for help.  I've always been strong and would be able to pull myself up anytime.  However, the chronic stuff is just that...chronic and forever.  I was put on a mild anti depressive pill and it settled down.  I wasn't so sad or anxious as I usually had been.  Being a person that everyone else relied on turned around and I found myself relying on everyone else.  It was hard for me to ask for help and not because of pride but because I'm one who always thought, try, try before you ask for help; I was way beyond trying.  Anyway, I did ask the GP for help and she did change my life with just a simple pill.  I feel mentally wise, so much stronger than I was feeling.  In fact, my husband, my, caregiver, who was also starting to break down asked for help after me badgering him to get that little bit of help and you'll feel so much stronger.

Anyway, feel better and God Bless.

Warm regards,

Frustrated

Also, strong wasn't the correct word because depression wasn't and isnt' a weakness.  It takes a strong person to ask for help.

<3

frustrated>

frustrated>

Hi all but wanted to say to eileenh that i had my suspicions(right or wrong) about HRT -ONLY i had been on HRT fir 15yrs as i had full hysterectomy when i was 50 and was put on it(am 69 now) but then told imust come off it and low and behold i developed HRT 6 months later!!also when diagnosed 4 years ago i refused to go on bone protection  too  (reumy not pleased with me at all ) but was reluctant because of readups against it.did have dexa scans which showed little  OP in spine  and was told it should be treated -but  when tne did another DX a year later it showed a better than last scan.so i have been taking only one cakcium tablet per day as they make me constipated .just hope im not doing myself any harm by not taking it.I am on 5mg now and still get the pain and stiffness -sore butto ks

 

Oh!!!just attempted to send a lengthy reply and dont know what i did wrong but just as was finishing my reply i botched up so if you got a half finished reply or even nothing please let me know stupid me!!!

Hi Jean ~

I cannot tell you how many times I've done that.  I've had to write a little then highlight and copy, then type on then highlight again and so on.  The thing is, I have to "remember" to do this more often.

Sorry for your frustrating experience.

Frustrated

Eileen, thank you for telling me your experience......I am 74 years old....time to say good bye to STAIRS!!  My knees can handle them but not my lower back especially left hip area.

Energy yes I'd love some of that.  I have no stamina anymore but thinking back this has been happening for a few years in a more mild fashion, I prided myself on being able to work all day alongside the men and as I reached about 50 my stamina seems to abate gradually and now I don't have much at all at 64.  

My Mum had a hysterectomy when she was 48 and was put on HRT untill she was 80 (why so long is any ones guess but she had absolutely no problems with any syndrome, sickness or disease) Then the Dr's saw a study that said HRT could cause heart problems so her Dr  weaned her off the HRT and lo and behold she developed GCA within 2 years and to this day I have always felt they should have left her on the HRT as it couldn't have been any worse what she has been through since with AF etc

Hi David ~

Doctors use mtx to try and wean those off of pred if their body is dependent on steroids.  It didn't mean you were getting worse.  Just meant that you couldn't come down on steroids w/o your symptoms getting worse.  I agree with you regarding going on and keeping up on steroids but if they can do the lowest dose as possible w/o your body getting attached to that awful drug (all are awful but a necessity of life for some)then perhaps you won't need to be on mtx.  Just think back when we were never even a flicker in anyones eye, meds weren't readily available for people, now to date, times have obviously changed and we are able to get the drugs needed for most anything.  Progress.

Hope you feel well soon.

Frustrated

I think thats were I am. The Doctors encourages me to reduce the steroids but the rhumi was adamant I had to get down. He did say the mtx was to help lower the pred.

But Im so against putting another medication into my body, and mtx is not side effect free [is it?].

I have forced myself down to eight to avoid the mtx and delayed my hospital appointment . . . all in order to give myself time to reduce steroids and get the rhumi off my back . . . but oh how i would like to go back up to 10/11  . . . I was a much happier person.

On the other hand has the reduction in steroids exposed pain from oa in my lower spine. would the pred have masked it. Xray shows one of the lower vertabrae has some deteriation on it with a spur on the side.

What is mtx all about in these situations.

 

It has been thought that using mtx will allow a lower dose of pred to have the same effect as a higher pred dose without mtx. The mtx changes the way the body metabolises the pred, making it more effective. There have been a few studies done, one showed a positive effect, one showed it didn't work and another couldn't decide one way or the other. The latest thoughts from the experts is that it doesn't really help in plain PMR. On the other hand, about a fifth of patients who are initially diagnosed with PMR later get the diagnosis changed to late onset rheumatoid arthritis (LORA) - it isn't known whether PMR morphs into LORA or whether it was simply the wrong diagnosis originally. Mtx is the first drug that is used in RA so for these patients it will probably help. In some ways it makes sense to use it in patients for whom pred doesn't achieve a dramatic result to start with or who get stuck at well above 10mg. Many people get stuck at about 10mg for some time - but then are able to reduce further later. But the doctors get impatient.

OA is also pain due to inflammation where the bone is rubbing on bone after cartilage has been worn away so pred will help that pain too at higher doses. 

Hi David ~

Methotrexate like any drug has side effects.  Mine were being nauseated and not able to eat like I should.  I made sure when I could eat it was something heatlhy and substantial.  In my situation, steroids did help with the inflammatory issues, however, they were unable to wean me down even by one.  After trying to lower it by 1/2/3, and being unsuccessful, the Rheumi started the methotrexate with plaquenil which is used in conjunction with a second/first medication such as the methotrexate. Don't get hung up on the fact that it's purpose was to be used as a chemo.  Many medications have several uses.  The Rheumotoid Dr should know your medical history and would determine if they felt this would be of good use to you.

Plaquenil, medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works.

Methotrexate (usually at high dosages) has rarely caused severe (sometimes fatal) blood/bone marrow problems (decreasing your body's ability to fight infections) and stomach/intestinal disease (such as bleeding) when used at the same time as non-steroidal anti-inflammatory drugs (NSAIDs such as indomethacin, ketoprofen). Therefore, NSAIDs should not be used with high-dose methotrexate. Caution is advised if you also take aspirin. NSAIDs/aspirin may be used with low-dose methotrexate such as for the treatment of rheumatoid arthritis if directed by your doctor. If your doctor has directed you to take low-dose aspirin for heart attack or stroke prevention (usually at dosages of 81-325 milligrams a day), you should continue taking it unless your doctor instructs you otherwise. Ask your doctor or pharmacist for more details on the safe use of these drugs (such as close monitoring by your doctor, keeping the same doses of NSAIDs).

While this states that it decreases the body to fight off infection, so does steroids.  It's one bad, icky drug for another.  The point of them switching me from steroids to Mxt and plaq, I just couldn't handle steroids and they couldn't (for over 6 mths) could not get me off steroids even lowering them was an issue.  It happens.

So, be well and hope you're up and around soon!

"Raise your glass" (my husband does poor rendition of Pink! but he tries and he does accomplish, laughter!)

Warmly,

Frustrated