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Breathlessness - caused by reduction in Prednisolone, or because I need more Prednisolone?

Posted , 15 users are following.

dianthusdoris
dianthusdoris

Hello everyone

I started my PMR/GCA journey on 7th January 2015 - and what a dreadful year it has been! However, I am so so grateful for this site and for all the helpful advice I have gained. Although I have only posted a few times during the year - my problems have been so many, I did not know where to start! - I have read the posts every day, and learned a great deal from other people's experiences. Thank you, thank you, thank you!

I have now reduced from 60mg Pred to 35mg Pred each day. I have had a tendency to be breathless ever since I started Pred and put on weight, however, the last couple of weeks this breathlessness has got much worse. I only have to get up from my seat and take a few steps, and I am puffing and blowing and my heart is pounding - so much so that I cannot speak. Can anyone help, please? Is it the reduction in Pred that is causing this? I am due to go down to 30mg a day from tomorrow, but I am not sure whether I should reduce, in case the breathlessness gets worse. I would appreciate any advice, please. Many thanks.

0 likes, 14 replies

14 Replies

  • tina-uk_cwall
    tina-uk_cwall dianthusdoris

    Posted

    Hello there, I'm sorry but I can't offer much help other than to explain these symtoms to your dr as they may not even be PMR/GCA, preds related.

    extra weight doesn't help - I know about that myself. Have you had an iron test? Low iron can cause breathlessness to.

    but you really need to speak with your GP and they in turn should give you a full physical. All the best, tina

  • Artdesign
    Artdesign dianthusdoris

    Posted

    Hi dianthusdoris,

    I had the breathlessness too along with the shakes and heart palpitations from Pred. I'm at 40mg now. My  rheumy said it was drug induced anxiety which can happen... and gave me anxiety meds. It helped a lot. I can now talk and breathe and eat and breath...so I feel better. I still can't move fast of it starts...but at least  I can talk and eat without sounding like I'm on the verge of an anxiety attack.

     I'm still being seen by the pulmonary and cardiologist for tests just to double check there aren't other issues. I will know more this month when I see them again. 

    Maybe ask your rheumy if it could be a similar reaction?

     

  • gillian_25383
    gillian_25383 dianthusdoris

    Posted

    Probably nothing but best to check it out with doctor as prednisone can cause heart problems.Good luck and hope it is nothing bad
  • Guest
    Guest dianthusdoris

    Posted

    I agree that your GP should know right away to help determine the cause of your breathlessness. I too gained weight and had to pay attention to my breathing for a few weeks. It has improved as I reduce dosage, have less fatigue, and can walk further. My weight is heading down very slowly. Keep us informed so we can share with you. Here is to a better 2016!!🎆 Ann11195
  • reggie92967
    reggie92967 dianthusdoris

    Posted

    I'm on 17.5 mg. prednisone since July. started at 15 mg. then it was reduced to 10 mg. every other day. After the 4th or 5th day of the 5 mg. reduction I had a real bad steroid crash. I was put back to 15 mg. daily then my doc. added 2.5 mg. more daily. Over the last couple of months I got the "moonface", bloat/swelling/weight gain, whatever you want to call it. I am uncomfortable & have noticed more breathlessness than ever before, heart beating harder, etc. My fam. doc. is also a cardiologist of 40-years & has found no cardio problems. I use, advised by my PMR spec. & fam. doc., xanax when needed. Am starting a daily walking program tomorr., was a big long distance walker before PMR & my other med. condition,WM. But, due to about a 65% reduction of all the body pain, fatigue, & lethargy, even though I hate the weight gain, blown up face/neck, breathlessness U'm determined to exercise. It is so nice having less pain, soreness, stiffness, & decrease in the debilitating fatigue. I wonder though, will this relief last on 17.5 mg. I know PMR & steroid treatment is so hard for our docs. to monitor & control. It's a huge game of up & down, triial & error. Best to all my PMR cohorts out there.
    • tina-uk_cwall
      tina-uk_cwall reggie92967

      Posted

      Reggie, I suspect that your flare was due to the huge dose reduction between 15mgs and 10mgs. Also I don't know how long you were on the 15mgs dose for before the reduction was recommended.

      you should be on 15mgs, then 12.5mgs for at least 6 weeks on each dose, I was then left on 10mgs for 6 months before a further reduction.

      if you find the reductions too much you could always try only reducing by 1mgs at each reduction, because what you don't want us to yo yo through the doses. Each flare will become harder to get under control, better to stay on a higher dose for longer, get any inflamation under control then reduce slowly and by little.

      i was diagnosed December 2013 and am presently on 6.5mgs. I've suffered 1 flare and definately do not wish another, so that's why I advocate the slow and by little reduction method. All the best, tina

    • EileenH
      EileenH reggie92967

      Posted

      Yes, I agree with tina, your problems could well have stemmed from a far too large a reduction - going from 15 to 10mg every second day is asking for trouble in PMR. Top experts in the US have recommended for years that no reduciton in pred dose in PMR should be more than 10% of the current dose. That was way above that - and alternate day dosing is also not recommended in PMR. The antiinflammatory effect of pred lasts from 12-36 hours depending on the person - if you are towards the 12 hour end you'll struggle to go from one morning to the next, never mind a full 48 hours. 

      If you follow this link

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      you will find a link to a paper, the "Bristol paper", written by PMR experts for non-experts to help them diagnose and manage their PMR patients better. Their reduction is the one tina describes. It is still a bit fast for some patients, 1mg at a time usually works for them. In the replies you will find a very slow reduction scheme which smoothes the drops even further - it has worked for many patients on the forums and is now being used in a clinical study on management of PMR.

      Once you have got the inflammation under control you should be reducing slowly to find the lowest dose that manages the symptoms as well as at the start. That dose is different for everyone so a fixed reduction doesn't work, it is all too easy to overshoot as happened to you. Many patients struggle to get below about 10mg per day for months, some for years - which illustrates the risk of reducing as you did. There is no way of knowing how active the underlying autoimmune cause of the symptoms we call PMR - the more active it is, the higher the dose of pred you need at the time. And yoyoing the dose, allowing a flare and increasing a lot to manage it again often leads to a steroid resistance, making it more and more likely a higher dose will be needed.

  • noninoni
    noninoni dianthusdoris

    Posted

    I have that problem too big time.  Now my doctors are all disagreeing with one another and pointing their fingers at the other doctors! I have now been on 3 short high dose prednisone therapies since August  (40mg 4 days, 30mg 3 days, 20mg 3 days, back to 10mg.)  Each one helps for a couple of weeks after I am put back on 10 mg dosage, then the breathlessness comes back.  At one time I was on oxygen.  

    OK my pulmonologist thinks it is the PMR inflammation that has gone to my lungs.  My rheumotologist thinks I should be treated as if I have asthma by the pulmonologist!  Then there is some thought about my arrythmias, although the worst of the arrythmias was fixed 3 years ago with a cardiac ablation, long before PMR and breathlessness. Or maybe it is other heart problems. I want to yell at all of them to please figure it out!!   Now I do nothing more than feed the dogs and I get breathless and have to sit down.  Thank goodness for electric carts at our huge grocery stores!!

  • Booklady25
    Booklady25 dianthusdoris

    Posted

    Dear Dianthusdoris

    i can't comment as to whether the pred has caused the breathlessness but don't discount the possibility that the breathing problems are caused by something other than the drugs. I did and was diagnosed with a 

    pulmonary embolism just in time. I am now on warfarin, probably for life! 

    If in doubt see your doctor or if it gets really bad go to A&E, it's better to safe than sorrow.

    best wishes, annie

  • EileenH
    EileenH dianthusdoris

    Posted

    I'm sure I replied to your post last night - but obviously it has got lost! I was having awful internet access problems - too many Italian teenage tourists by half!

    Pred can cause breathlessness, it is thought to be an effect on the intercostal muscles, but pred can also lead to cardiac problems. If it comes to that - so can the underlying autoimmune cause of GCA and PMR. 

    You really need to see a specialist - and have some pulmonary and cardiac assessment tests to rule out other causes. Vasculitis (GCA and other sorts) can also affect the lungs and it is possible you need other medication.

    If you are breathless so you cannot speak then you need medical advice, not what any of us can offer on the forums. You should see your GP as soon as is practical - and if the breathlessness gets any worse or lasts longer than usual call am ambulance. Difficulty in breathing, even if it is in response to slight exertion does come under emergencies and the paramedics won't tell you off. It could be an infection that is causing it, or even, as someone suggests, pulmonary embolism, and both need urgent treatment.

  • JanSP
    JanSP dianthusdoris

    Posted

     Hi,

    I have GCA and PMR for 6 years. My PMR has been quiet for a few years after one flare but the GCA has had four flares. During the last two I have blown up so much I don't even recognize myself. I had put on 40 lbs., took off 30 lbs. but then the last flare came before I finished losing the weight along with another 40 lbs. The only good thing is I don't have wrinkles at age 70 with my moon face. I remember saying that to my mom who had lupus and two other autoimmunes and was on pred. I'm glad she never knew I developed 3 possilbly 4 autoimmunes. She passed away 13 years ago.

    I am also having breathlessness - much much more during this flare. I am also on a CPAP machine for sleep apnea ( just air no oxygen) during the last two years. My docs think carrying around all this weight, having a belly pushing up into my lung space and a scoliosis I've have since childhood robs me of more space. It's very hard to do any exercise as I'm huffing and puffing and I used to be very active. I'm on 30 mg of pred and 1ml methotrexate down from 80 mg. of pred and meth. I usually start on 60m pred but that wasn't handling it.

    Something also just showed up in a CAT scan (can't have an MRI with my pacemaker) and three docs don't know about it! I know it doesn't belong in this catagory but maybe someone has heard about it or has an idea what specialist I have to see about it. I have an air bubble in my spine. It's called a pneumorrachis in my report. Not much info on the web and I didn't have an accident. I have been having back pain but that comes and goes

    • EileenH
      EileenH JanSP

      Posted

      Have you ever had an epidural anaesthetic or a spinal tap? And apparently it can happen in asthma or even after really hard coughing. It has been very rare and is usually found by accident - but because of the far more advanced means of imaging used nowadays it is being found more often. The usual cause is severe trauma after an accident but often it is like yours - turns up when a CT is done for something else.

      "Patients with pneumorrhachis are usually managed conservatively. Most of the times, PR is asymptomatic and constitutes a radiological curiosity. The intra-spinal air reabsorbs spontaneously and completely into the circulation."

      The medical article I took that from says an interdisciplinary approach is required and the possible reasons worked out and dealt with - but they very helpfully don't say WHICH! Another medical article says "spinal specialist". 

      So - I'd look for a hospital that does spinal surgery as a specialism, maybe in association with orthopaedics. Or if you are in the US and looking for an office-based doctor:

      "A spine specialist is a health professional who focuses mainly on treating spine conditions. Common specialists include chiropractors, physiatrists, physical therapists, orthopedic surgeons, neurosurgeons, pain management physicians, anesthesiologists, and many rheumatologists and neurologists."

      I imagine you might have to call around a bit and ask if they are prepared to take it on. Though I also imagine in the first instance it is a case of ruling out real nasties (which the CT scan should have done), waiting and re-doing the CT to see if it is resorbing and only if it doesn't, looking further.

      But you're a rare bird it seems!

       

  • flydog
    flydog dianthusdoris

    Posted

    Hi Dianthusdoris,

    Your breathing sounds very much like COPD, I suffer with both PMR & COPD, I'm out of breath all the time, when I take a shower & towel myself dry I have to sit & get my breath back before I can shave, when I walk up the stairs I have to stop at the top  and get my breath back before I can go ant futher, I could go on all day with examples, but if you take my advice, see your Dr and have it checked out, all the best, Max

  • dianthusdoris
    dianthusdoris

    Posted

    Thank you all for your helpful comments.   

    Following PMRpro's advice, I got an appointment with my GP at 9am this morning.   He diagnosed a chest infection (as you suspected) and prescribed antibiotics.   Blood pressure and temperature were both fine.  He arranged for me to have an ECG straight away - and that was ok, too.   The doctor and the nurse were both very thorough, and they agreed that once I am free of infection, in 4-6 weeks' time,  I should have a Lung Function Test.

    I will keep you informed of my progress.

    Thanks again.

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