Unable to take prednisone

[naturalchoice]

Hi, I was recently diagnosed with PMR. I was prescribed prednisone 15 mg and then 20 mg. I had a bad reaction (feeling drugged and high anxiety) to the prednisone and had to stop taking it. I have always had adverse responses to medications. Yesterday I started methotrexate. My pain is very high and I am struggling walking and using my right arm. Has anyone had luck with methotrexate for PMR as the sole treatment? Or have trouble taking medications? Is there anything that can be taken for pain? Thank you!

[PMRpro Ambassador]

I'm afraid methotrexate on its own doesn't do anything reliable for PMR - if it did they would use it instead of steroids given their fear of them. You will find the occasional person who claims it worked for their PMR - the chances are that it wasn't PMR they had but some form of inflammatory arthritis. In such illnesses mtx will take up to 6 months to work - so I doubt it would provide a speedy relief of pain in PMR like pred does even if it does work eventually.

Pain relief in PMR is from the pred - it combats the inflammation which is the cause of the pain and stiffness. Very few people find that NSAIDs work - and they are the most likely as they are non-steroidal anti-inflammatory drugs. There must be an element of anti-inflammatory action.

Have you tried a much lower dose of pred in combination with the methotrexate? That is why mtx is used - not because it does anything to the PMR but because it often allows a bigger result from a lower dose of pred.

You are in the US I assume since you say prednisone. There are rheumatologists in the US who are using Actemra for PMR - that may be an option to be tried.

[naturalchoice in reply to PMRpro]

Thank you so much. I am in the US and will ask my doctor about Actemra. I will also message her about the low dose pred but I have terrible luck with medications and my symptoms are getting worse. This is all new to me. I was very active, loved running and exercise and now can barely walk. Thank you so much for your response. I feel lost in this right now. Many Thanks,

[Terry615 in reply to PMRpro]

I think you’re correct about Actemra being used more widely here in the US - the pharma companies are working to make it much more affordable. But it takes a while to get results and, with me, trying a couple of different routes of administration and dosages.

It’s not a quick fix. I’ve been on it a year now and have gotten off the methotrexate and pred down to 1 mg daily. My rheumatologist, surprisingly, wants me to stay on the very low pred dose for a while, and is keeping me on the weekly injections of Actemra 162 mg SC. After 3 years of ups and downs, I’m doing great now and he says he doesn’t want to “rock the boat”. He wants to wait a while before trying to decrease meds. I’m grateful he feels that way.

[PMRpro Ambassador in reply to Terry615]

It isn't available for PMR in the UK (nor is it likely to be) and the UK and Europe doesn't have access to the programmes they have in the US for people without cover. The companies use it as a way of doing clinical studies without having to get ethical permission.

How quick a fix it is depends on the patient - you are obviously a slow responder but many are able to reduce their pred dose to low single figures quite quickly. I only suggested here because of the pred problem. I'm far from sure I'd use it when I have no problems with under 10mg pred.

[Terry615 in reply to PMRpro]

I think the original use for Actemra for PMR was actually done in the UK. Positive results were was written up in the BMJ. Following success with the med in the UK, the US began using it.

[PMRpro Ambassador in reply to Terry615]

I don't think it was done in the UK, There was a letter in the BMJ:

ard.bmj.com/content/early/2...

discussing an open-label uncontrolled study done in the Rheumatology

Department, Cavale Blanche Hospital and Brest Occidentale University, Brest, France by Devauchelle-Pensec et al.

[Telian]

I am no expert on mtx but you've had a good response from PMRpro and can only wish you well.

[naturalchoice in reply to Telian]

Thank you.

[HeronNS]

I believe hydrocortisone is occasionally used. It isn't as strong as prednisone so has to be taken more than once a day, which is a nuisance, but for that very reason it may be better for you. Here is a link to a thread where someone was taking it, although I don't know the circumstances.

healthunlocked.com/pmrgcauk...

[naturalchoice in reply to HeronNS]

Thank you very much. I will read up on it. Many thanks!

[karools16 in reply to HeronNS]

My Endo put me on Hydrocortisone, with horrendous results! IF you go onit, hope you can tolerate it.Msg for naturalchoice.

[SnazzyD]

Hello, I’ve no idea what you went through or how long you took it for. Just in case you end up with no option but Pred at any point, I’d like to reassure you that your reaction isn’t unusual, unpleasant though it is. I’m one of those that make doctors roll their eyes because I react acutely to most drugs. I started on 60mg and felt very drugged about an hour after taking it. I couldn’t function so I just took it before bed and slept through it, problem solved. The anxiety can be pretty bad and some on here have gone through the mill and needed pharmaceutical help, but it doesn’t last forever. When you first start taking Pred it can be very scary but the body does adjust after a few weeks.

[naturalchoice]

Thank you so much. That gives me hope. I'm in so much pain. I took 15 mg of prednisone for 4 days then 2 days at 20 mg. On the first day at 20 mpg, I felt completely drugged, blurred vision and acute anxiety. I stopped taking the medicine at 7 days and still had side affects from it 4 days later. My rhumatologist said I could try 5mg pred with the MTX to see if I have anxiety at that level or get medicine for the anxiety. Thank so much for your message.

[SnazzyD in reply to naturalchoice]

7 days is nothing, so take heart. Perhaps try again but don’t worry about the fact you’re feeling out of control, anxious and a little bit mad. That’s fairly normal and if you don’t worry but go with it, that’s 70% of the way. Once you’ve gone down a bit in dose it’ll ease. Of course this is based on a message and no knowledge of you, but sometimes I think we reactors over think it.

[naturalchoice]

Thank you for your message. It helped me.

[schmuppy]

I don't know if you've made any attempt to modify your diet, but in my first six months of PMR (not knowing for sure if it was PMR because I wasn't on pred), I controlled the condition pretty well using a modified version of Clint Paddison's diet. His diet is strictly plant-based, and it can be pretty boring as you start out first with just things like brown rice and sweet potatoes, but I have found that there are certain foods that I absolutely have to stay away from, even on the prednisone. Dairy is the number 1 culprit - all diary must go. Gluten too can be bad, so best toss that one as well as wheat, rye, corn and soy are all dosed with a lot of pesticides before they get processed into food. Refined sugar also has to go. No meat or fish at the beginning, then try adding back fish later. Oils can be tricky too - best oil for me is sesame oil. Can't do canola, vegetable oil, or corn oil.

There is also a natural anti-inflammatory called CuraMed, which is a 750mg brand of Curcumin extract from Turmeric. Take it with food, as it can mess with your stomach. And honestly, I top my pred off with some Advil every once in a while, and it mitigates any extra inflammation with one dose lasting almost a day and a half. I think the reason people say regular NSAIDS don't do anything to treat PRM is that they don't do ENOUGH - over the counter NSAIDs aren't strong enough to do what steroids do. But they can help a bit.

Hope you feel better soon.

[PMRCanada in reply to schmuppy]

I took Curcumin and took an NSAID (Naproxen) 1000mg a day for 5 months and it barely made a dent in my pain and inflammation. I also adjusted my diet (but didn’t completely eliminate any of the food groups), and my exercise routine (slowly working in more activity), but alas Pred was the only thing to truly bring any relief. What also helps me is heat....going in the hot tub.

I too wanted to go the natural route with the help of my daughter who is a nutritionist, as I was afraid of the pred, but it just couldn’t combat the pain and inflammation.

It is unfortunate that you Naturalchoice, are having such an adverse reaction, and your pain is ongoing. You will find this forum most helpful and supportive,

I know of one man here in Ontario, Canada who made it through his whole PMR journey without pred under the supervision of a local rheumatologist and he is now in remission. It was a painful and debilitating journey, and I do believe have a bit different (better) outcome than woman with PMR (but others on this forum may correct me).

Good luck Naturalchoice, and keep us updated.

[naturalchoice in reply to PMRCanada]

Thank you for your response. I started on methotreaxate 10mg 1X a week. I think it made me feel nauseous all day. The pain was so bad I took 5mg of pred. The rhumatologist said that would be fine, (knowing my reaction to it) but more is better and suggested maybe an anti anxiety med to take while taking pred, but I'm not comfortable with that. Thank you all for your responses. It makes it all better to not feel alone.

[PMRpro Ambassador in reply to naturalchoice]

Don't rule that out. You won't be the first to need it so there is no shame.

I lived with PMR for 5 years without pred so I do know exactly what you are dealing with. I had things that helped the stiffness - but never the pain and the pain wears you down. I became depressed and isolated.

I was self-employed and went to a gym with a pool every day Mon-FRi and did an aquafit class. Getting dressed in a swimsuit and joggers and getting there was fairly hellish - and I could only go if I could drive there. Public transport wasn't an option - I couldn't get onto a bus in the first place! After an hour in warm water - couldn't do it when it was cooler - I could move enough to be able to get dressed properly. I could also manage heavily adapted Pilates and Iyengha yoga classes. That, and my Bowen therapist and osteopath for the add-ons, kept me semi-mobile for the best part of 5 years. Then I got pred - and got my life back.

If getting pred had been associated with taking other medication to deal with side effects I'd have been queuing for them. Five years is a long time to be in pain that won't go away whatever you do.

[naturalchoice in reply to PMRpro]

Thanks, I'm taking the low dose pred 5mg and will slowly add on. I'm thinking of asking my rhuematologist if I can drop the methotrexate. I felt like I had a terrible flu all day the day I took it in addition to the insane pain. I love hearing that people get back to their lives. I was very active, into fitness running and had just turned 50. I thought I was dealing with a bulging disc in my neck and back. Then they diagnosed me with PMR. I cannot deny that the pred worked even though the side effects were awful. I eat very healthry and take supplements. These days I drive to the beach and swim in the ocean. I can mentally escape for a while in the water.

Thank you for your message.

[jwb43]

Natural choice, I have the same situation as you unable to take prednisone. I have been fighting my pain for six years. I have no guarantee that it is PMR but it's very similar to PMR. I wish there was a way we can get in touch I'm in the US also I could give you some suggestions of things that help. But just out of curiosity try oil of oregano, or benzodiazepines like Lorazepam which is an anxiety medication. So if it does not help your pain you might be able to use it to take along with your prednisone to help calm some of that anxiety that the prednisone gives you. There is also a product of the United States call relief factor you can look it up online it's been helpful as well. Wish you the best of luck let me know if any of these help.

[Marilyn1959]

At 15mgs I had similar issues but managed to stick with it. I found all adverse symptoms reduced between 12.5 - 10mgs. Regardless of side effects of pred, did you get any relief from pain when taking it? If so I think Rheumy's suggestion should be tried, with a view of increasing pred by 1 mg at a time say each week to see at what point, if any, you can tolerate pred dose providing your GP or Rheumy agrees.

[Pmrmolly2018]

I was diagnosed with PMR 14 weeks ago.....diagnosis was fairly quick as extreme fatigue and my shoulder being ‘nailed to the bed’ in the morning, I went from happy energetic 71 year old to a severely ‘disabled’ miserable ‘old’ woman in a matter of days.

No quick response to 15 mg pred so put up to 20 mg. Taken in morning, it still took til noon to work so life unmanageable and horrid. Mouth ulcers and cold sores as well as feeling pretty ‘nutty’ (!!)..I to do not respond well to many drugs I.e. Statins, but had to persevere as the alternative was unthinkable. Changed to late evening (I wake up around 11pm and take then with biscuit and milk). Life is much improved, I sleep well and worst side effects seem to be reduced during the night and now down to 12.5mg but will now slow down tapering by 1mg every few weeks and see how I go. No more stressed out feeling.....taking this way was reluctantly approved by my GP (not typical) but for me has made my life worth living again. Can cook, be happy with my family and hubby...and mostly fatigue all under control. ONLY downside is I have to go to bed early as pain cycle starts early evening....(even on 20mg only 16 hours relief before ‘the tin man’ returns). AND of course, there are some inexplicable BAD days...

I think I am lucky as so much ‘good time’ during the day!

...

[PMRnewbie2017]

I would consider making dietary changes. I did, and have felt the benefits. On the subject of pred I have some thoughts. In US prednisone is used. The body metabolises it to prednisolone which we use in UK. Now this is a bit of a long shot and not really based on science but I wonder if your reaction would be the same with prednisolone? I don't know if you can get it in US? Theoretically you shouldn't react any differently but it might be worth a try. Please think long and hard about the suggestion to try lorazepam. It's a horrible very addictive benzodiazepine. There will be people who say it has helped them but getting off it is extremely difficult for most people.

[PMRpro Ambassador in reply to PMRnewbie2017]

"Theoretically you shouldn't react any differently"

The theory though IS wrong though! I was fine with prednisolone at the start, whether it was plain or gastro-resistant. Then I was switched to methyl prednisolone when I moved to northern Italy as the standard steroid used here. It was horrible from the first month but the horrible turned to a hell: I gained weight in the usual places, grew a fine black beard, my skin and hair went mad etc. And the final insult was the lack of symptom control - even at 20mg (I had been at under 10mg pred) I could barely move until early afternoon and even then it was far from good. I had to take it at night to be able to do anything next morning.

Then I was switched to prednisone in the form of Lodotra/Rayos - overnight I dropped to 15mg and had the original pred miracle again. I quickly dropped to 10mg and eventually was down to 5mg (until the next flare in disease activity). And with Lodotra I have no identifiable side effects.

[PMRnewbie2017 in reply to PMRpro]

Hi, thanks for that. That was my feeling when I replied to naturalchoice. You and I know there's so much more to consider than just the drug itself. People's metabolism varies, sensitivities to excipients, blah,blah,blah. Oh for individualised personal medicine!

[PMRpro Ambassador in reply to PMRnewbie2017]

If only the average doctor understood it too!!!

[naturalchoice in reply to PMRnewbie2017]

Thank you for your message. I agree with you regarding zanax. I think I'll cont to take 5 mg pred and slowly increaseonce the fear factor has passed. I can tell that even 5mg. helped.

[PMRnewbie2017 in reply to naturalchoice]

Lorazepam isn't Xanax! Would hate for you to quote the wrong thing to a consultant or doc!!

Lorazepam = Ativan

Alprazolam = Xanax.

Both benzodiazepines and unfortunately both addictive etc.

[Twopies]

I, too,, am terribly medication sensitive. On the beginning doses of pred, I was out of my mind, couldn't breathe, ended up in ER where they said I was having a "panic attack" although one doc did say that pred makes some people crazy. As I went down in dosage, I did better. Have you tried split dosage? Or have you tried a lower dosage to control the pain? I'm convinced that at least in my case, a lower starting dose would have been sufficient. After almost 2 years, I'm on 5 1/2 mg.looking for the day I will be PMR free! Best to you, you will get there.

[naturalchoice in reply to Twopies]

Hi I just took 5mg yesterday. I think it helped. The doctor started me on 10 mg methotrexate 1 time a week but I felt sick all day. I am so sensitive to medicine that I hope, like you, a tiny amount of pred, might do the job. I'm also trying to buy all the right foods and keep exercising if I can. I was a runnner and very active. I just turned 50, so PMR was quite a blow. Thanks for your message!!

[PMRpro Ambassador in reply to naturalchoice]

Beware of exercising too much - because your muscles are left intolerant of acute exercise because of the autoimmune disorder that causes the symptoms we call PMR. They can't tell you you are asking too much of them and having overdone it they take much longer to recover from delayed onset muscle soreness which as a runner you will know all about. You need to start your training from scratch - from just a few mins to start with and build it up very slowly, a minute or two more at a time. That does work - and you will then hurt less.