Ok I had to ask my PMR Tribe. Started the leflunomide, I am on 23.5 pred, rheumy is myopic about getting my pred dose down. So I eventually agreed. So now the strange thing is I have very increased fatigue and am dizzy when I stand up. But then this afternoon my pain intensified....and it had been settling down finally. my muscles on my arms started.burning.....what the hell????? I had a quiet day. I read the side effects it did mention muscle.aches but this is strange. Why would it make my PMR and OA worse? Not a little either....it's high on the pain scale.Anyone?? Ideas? Others have this with any of the dmards??? Now what do I do? 😳
Thank you in advance. Be well.
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Wallysma
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Hello, Wallysma. I'm wondering if it actually is the Leflunomide that is responsible for these horrible symptoms you're experiencing - particularly as you're less than two weeks into this new medication and that it is said to take somewhat longer to feel any side effects (you have read the patient information leaflet). However, it certainly is a coincidence.
What dose of Lef are you taking?
If I were you, I would be on to my rheumatologist today. There is no justification for your level of pain to be ignored. You must be exhausted and just wanting it all to go away but please try to summon the energy to question what's going on.
Thanks for your reply. Yes, I was stunned yo be honest...along the lines of "what fresh hell is this" ..... so you all are my go to's. I know it takes weeks to do it's thing but side effects can happen any time and they can resolve. I think I didn't expect THAT to happen. I am on 10 mgs. I will see what happens today. My docs offices are closed for the holiday. I might call the pharmacist.
Thanks do much. I appreciate your empathy...you always seem to know how we feel. I am exhausted...as a symptom and in general from this.
It's so not fair!! I hope you get some answers soon but watch out for any symptoms PMRpro has mentioned and if you can't reach your doctor ring 111 for advice. Please let us know how things go. ❤️
No I learned this yesterday...111 is a triage line not emergency response. I wish we had one. But their 999 is equal to our 911. There you have it! Thanks, flygirl65. Take care.
"Check with your doctor right away if you have any blistering, peeling, or loose skin, chills, itching, joint or muscle pain, red skin lesions, often with a purple center, sores, ulcers, or white spots in the mouth or on the lips, or unusual tiredness or weakness."
In the link there is an enormous list of drugs that shouldn't be taken with LEF - including statins. Are you on a statin?
But I would be in touch with your rheumy as soon as possible. There is absolutely no future in taking a drug that makes you feel worse. It MAY not be the LEF but that is the first thing to rule out - and obviously the way to do that is to stop it for a while. Someone else on the forum mentioned in the last few days that they had found difficulty with walking and required airport assistance to be able to go on holiday - a week after stopping LEF, she is recovered and walking.
Wow....I feel so bad for her....but I am glad it resolved. I can't imagine being that debilitated. I wonder what they will do next for her med wise. At first I thought it was stuff being kicked up but then it started to feel different. It was similar to my response to quinilones. So I thought let me ask you all.
My docs are closed for the rest of the week but if it is bad or worse I will stop it.
Thank you for the info. I knew about the rash...don't have that at least. I think.I was stunned to be honest.
I definitely found it didn’t suit me , as well as losing mobility I experienced awful pain in my hips , particularly at night, it all subsided after about 5 days of stopping it , I had only been on 10 mg for 5 weeks
I am sorry you had to go through that. Are you trying to reduce pred? What will you do next? Did you try.methotrexate? I took that in 2015 and developed 2 infections right away. it was hard to breathe on it. So we stopped it. I can't get beyond pred in the 20's and my rheumy is.not a happy camper. So here I am. I would be happy if it helped. So I need to watch carefully. It is early yet but I can't tolerate things if they this way.
Yes....my rheumy did not seem to like that idea of Actemra...I am sure it's quite the cha cha to get it. But regardless I have to try this first. It really makes you dizzy. WhewI don't remember reading much about Actemra's side effects. Though it seems to have helped some on here. I am not sure I can afford it. I am now on limited income. I didn't answer you before -- I'm not on statin.
I knew what 111 was. Believe it or not I lived in England for a couple of years...in another lifetime. But it's not far removed from 911. I hope that won't be necessary. My rheumy will lose her mind! Ok thank you so much. Be well.
Does 911 have an advice line? 111 is more a triage line than an emergency service.
I think there are options where Genentech contributes to the cost but not sure how you qualify. I'm on Actemra and I can't say I can identify any side effects at all though of course the blood tests may show something up at some point.
Ahh....no it's not advice, though they tell you what to do until they get there. My bad I thought it was your 911. No one gives advice here for fear of being sued! I will have to check Genetech out. Dad2Cue got his but through the VA so that won't help. So we will see. And for cost or really coverage the difference between infusion and shots too to be considered.
I am glad it's helped you and w/o.any side effects so far. You are on pred too so would you say that it is a pred reducing med too or ....I mean if it helps it helps period. But I think you know what I am saying. I am thinking hoops and motivation of my rheumy...but I am splitting hairs with that q.
That's great that you were able to get down. I would think your adrenals might be cranky and lazy at this point you have been at this for so long. You might have to whine and dine them back to work. Woo them. Sweet talk and all that. How do you feel. Are your PMR symptoms really low or going/gone? I hope that's not a stupid question but since you are at 7...and now it's adrenals not responding. Do you have to see an endocrinologist??I hope you can get below 7.
The PMR-type problems are OK. I also have myofascial pain syndrome that was really bad in the flare in the spring and it is being a bit resistant! Getting there though.
UPDATE. Hi everyone... I called my rheumy after talking to you. It was clear that something needed to change and with the holiday and weekend coming up Ididn't want to wait until Monday. She called me before they closed...thank you, God.
So there was a meeting of the minds there before they called me back and they think I.have active PMR and RA. And wait for it...they are putting me on Actemra infusion. I need to get labs done next week and work with the staff to set up the infusion. With the infusion I don't think I have any direct cost...but obviously I need to check on that.
She told me to stay on my dose of pred no reducing (never thought I would hear those words ever after the craziness of the push to reduce. After telling me no way for Actemra in any way, shape or form -- here we are. But I am happy to have another option. I am also happy to hear that it has helped folks here. So....no more leflunomide.
And thanks for talking me off the ledge and supporting me giving it a try in the first place. My witchy feeling about it was strong. I was not wanting to do it...but I am not stupid and with some hand holding I knew I had to. And now I think this might be better to be honest but that is probably from the good Actemra feedback here.
Ok, thank you for listening and helping me. The information and advice is great...gets my brain through the jungle.
There can be problems - but it is easy to stop. Not like pred. Most of us on here have the weekly injections but there are a few in the USA whose insurance insists on it being the infusions.
Yes....I just hope I don't have any reactions or issues. It is all a bit scary but at least it's an option. But if here is anything I should look out for let me know. Medicare covers the infusions. Medicare is a strange beast but it has been good to me so far. I hope you can start.liw and slow with the infusions. Do you think that is what helped your PMR? I am glad it's better...regardless of why. What can you do for myofascial pain?
Pro, so you get injections of local anaesthetic into painful joints? Sounds amazing and something ive wished there was such a thing. How long do they last for pain relief? Just had a quick look, am i reading that right?
No - not into joints, into soft tissue. In fact, usually subcutaneous only.
I first had something like it in Germany some 40 years ago and they called it quaddeln - the word comes from the blister-like bumps the sub cut, injections cause. under the skin. At the moment of injection it is incredibly painful, it burns, but as soon as the needle is removed the pain stops - but you get maybe up to 10 injections like that one after the other. But the various doctors who have done it have all said he same - patients rarely refuse to have more and often ask for it, beg for it because it works so well for them! Sometimes it needs a course and in combination with physio sometimes lasts years before you need more, sometimes it is only months.
Hi Wallysma, I've joined this conversation late, but am so pleased to read you will be getting Actemra infusions.
I was on it (weekly injections) for 19 months and it really helped me get down from 30mg to 4mg until they suddenly decided to take it away.
The first few weeks were an adjustment, tiredness mainly but nothing more than that. I did get a couple of eye infections, that I seem to remember SheffieldJane also had, but even they stopped.
I really hope it works for you, and great your medics listened to you. I don't know about the infusions but seem to remember by the second one Dad2Cue was doing well on them.
I'm now on a higher dose after losing the drug so really frustrated by it all.
When's your first one going to be? Give it time, it's great news and thank goodness you rang.
Hi. Thanks for being in touch. I feel good about this. I was really blown away by the increased pain of the other med. I will get with the nurse next week to set everything up and I have to get additional blood work done. I hope it goes well for me as well as those I've met here. I will check out expected side effects and hope for best.
So how did you do as you reduced? I am sorry you can't get the med, is that due to change? How high have you had to go? I hope things settle for you. This disease is a lot of work!!
I was doing pretty well until they removed the Actemra. It is to do with funding and that I am classed as LVV. I am too old for their classification of Takaysu, but they are a lot of my symptoms. I did the DL reduction, so only 0.5mg over a 5 week periods. Was about to start a new 5 week taper from 4.00 to 3.5 when it all changed. Went up to 5mg, then 10mg and then a couple of days at 20mg. So all over the place now and have no idea where to go back to.
I am having a PET CT today, I think the consultant wants to stick it to me and prove that I am talking rubbish when I tell her how I am feeling. Part of me wants to prove her wrong, but I guess if the result is she is right, then what on earth is going on. However I can't see that it will give a good and honest picture if I have been on steroids for nearly 26 months.
Once that is all done and I have a physical copy of the results in my hand I am moving, but want to get that first.
You are so right when you say the disease is a lot of work. I resent having to think about it so much, but if you take your eye off the ball, you will pay!
Let's hope you get your first infusion soon, and then give it a couple of months at least before making any judgement. It definitely took time for me to start working before I felt brave enough to start reducing the steroids.
I don't know if she is still on the forum - but someone had been dx'd with Takayasu's in her 40s but noticed after her 50th birthday that the dx had been changed to GCA. According to her doctor because of the age criterion. Let's face it - THAT is an absolute piece of nonsense! I don't suppose it mattered in the past - but with the approval of tocilizumab for Takayasu's there are massive implications for us.
I remember reading that post re being changed to GCA, utterly bizarre as they are different.
Having said that, I think I lie between both - GCA and Takayasu, hence being given the diagnosis of Large Vessel Vasculitis.
I am on my way to Barts so don't have the PET CT report to hand but off the top of my head I had intense uptake through entire aorta, subclavian, common carotid and lesser in common iliac and femoral ateries and descending aorta.
Funny re iliac, my DVT in 1974 was there.....
I have food ready for when I get out and as my sister said on the phone, gobble up that pred, just not sure how much to take as I have reduced quite dramatically these past 4 days in the hope it would help. I have 10/15/20 with me.
My head feels like it is about to explode from the pressure and my stomach last night was none too bright, so roll on 8.00pm when I get in the cab home (insisted by Barts due to nuclear element) and swallow those tablets.
Not that different - the same mechanism underlies the inflammation or TCZ wouldn't work. It is the other added bits. But the west is yonks behind - because it was first described in young Asian women it was assumed to be a disease of young Asian females. But it isn't - it is found all over the world in various ethnicities. Just a lot of doctors don't know that and you get the silly "If you weren't too old/young I'd say it was ..."
Come on PMRpro, you know a 1mg drop is too much, you have told me that! Cut those tabs into halves or quarters!! At your stage, halves should be enough. Haha, I sound like you!!
I would do less - but my tablets can't be cut, I use Lodotra, the delayed release version and it is the only version of prednisone that is available here - otherwise it is Medrol, methyl pred, that comes in 4mg tablets.
Don't know about that med, but I could not take methotrexate. It made my right side hurt so the doctor took me off it. 2.5mgs pred was sufficient for a whole, but I had to go to 5mgs to really remove the pain after a long car ride (700+miles). Then I started gaining weight. Boo! I have reduced back to 2mgs per day and tolerating the intermittent pain. Anyone tried low dose naltrexone?
One quick q...did your side effects start immediately or after a couple of weeks? Yes...it does hit the hips and back doesn't it. Are you on something else?
first 2 weeks just felt a bit tired in the afternoon. Saw consultant at this point so he felt I was going to be okay on it and plan to increase to 20 mg after my holiday. By the following week I was getting very little sleep due to hip pain , and I must say completely different than what I have ever experienced before.By week 5 I was literally shuffling around, couldn’t drive or go out alone. Now I’ve stopped and mobile and no hip pain
Yikes. I am glad you stopped. You really hung in there. If I have any reactions to med they usually happen fast. I have a list of meds that I can't take but those were allergic reactions. On ones where the side effects were not doable that was pretty fast as well but those are just not tolerable won't kill me harm me kind of thing. So how are things going.overall now? Are you going on something else or doing more pred? It's hard that it's so limited.
I reacted very badly on lefluamide with everyone thinking I had had a stroke. I was later told it would take 2 years for my body to be totally rid of drug, however 3 years later still have brain fog and a’wobble board’ walk,!!
I was just going to ask the same question as PMRpro. I was not on it long enough to matter so I will be ok. I am sorry you went through that. But there is a drug you take when you stop it. Not sure it would help at this point but they should have given that to you. I would ask just in case it's not too late. Take care.
No after 3 years it should be out of the body - but neurological damage is very persistent which is why it is important to treat strokes quickly to reduce the damage.
Ok. I didn't read it as she had a stroke...sorry. That is frightening. After my experience of just a few days I could see someone thinking something was wrong with my brain. I was wobbly to use her word.and spaced and falling.all over the place (not face planting) it was crazy.
I remember when I read about the second med I was surprised. No one mentioned it and it's the first med for me where I had that.
Yes. It's scary to hear what happened to Bikerdan18. I stopped and I feel better all ready but n I was only on it for a few days. These meds can be wonderful...but they also can do damage. It is a juggling act. I am glad you did well. Can you get more doses? Good luck with the pet scan. I'm sorry you had to jump up on the pred. I know how frustrating it is to just go.up and up to try to get a dose to reduce the pain.
I had a similar experience when I tried Leflunomide. Increased pain all over my body made me want to cry. Felt dizzy and unsteady every time I tried it as well. my rheumatologist did not believe my pain was from the Leflunomide but it clearly was. After 2 years on prednisone mostly 15-10 mg. My ESR Is almost exactly the same as when I started prednisone. It is 80 now I think 85 when I started PMR treatment. Is this why all my efforts to taper fail? Can one actually get lower if their ESR is still high?
piglette has a perpetually high ESR - she has got to a lower dose.
But my suspicion would be this isn't the PMR we talk about. PMR isn't the disease, it is the name given to a set of symptoms and there are several potential underlying causes. Some don't respond to pred as well as our PMR does.
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