Microscopic Polyangiitis

My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide infusion and then went on to Azathioprine and low dose prednisolone and she has been on the latter for over a year now. Her mobility suffered hugely initially and gradually she was able to mobolise with a zimmer frame and then last September (2015) she progressed to using a rollator and was able to get up from her chair and mobilise independently. However, since November 2015 her mobility has retracted and we have seen her consultant and he said her 4 weekly blood checks were fine. She has now hit an all time low depression with not being able to mobilise more than a few feet without having to sit down and I wonder if anyone at all can suggest anything that may help her? We are desperate to get her back to mobilising out to the car to get her socialising but she cannot manage and in the last couple of weeks she has lost her appetite and is sleeping more during the day and appears disinterested in what's going on round about her. My mum is 84 and prior to being diagnosed in May 2014 she was very fit for her age and had never been near a hospital since she had me 50 years ago. It's killing me to see her like this but nobody seems concerned about her apart from my dad and I. Thank you in advance.

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  • It hurts me to have to say this to you and I really am struggling for the words to say this - but lack of appetite and sleeping a lot are often signs that someone is starting to slow down at the end of their life. It doesn't mean death is imminent, but it is a sign your mother is finding life very hard work.

    Have you any access to hospice care where you live - or at least, advice from the hospice team? Hospice does not mean it is the end - it is a type of care that helps people live better and often patients recover considerably, returning home for long periods even after being admitted for hospice care. Unfortunately acute care doctors are out of their depth at this stage of life and seem unable to see the slowing down stage of their patients' lives. They are taught to cure, when they can't they struggle. Palliative care doctors see things from a very different view and seek to enhance what their patients have.

    For the moment, use the car to fetch others to her, try not to impose a stress on her that she is not able to manage. She is tired - and forcing her to do things will only make her more so. Don't force her to do more than she is able.

    It is a hard place to be, for you and for the rest of the family, especially for your dad seeing his soulmate fade in this way. But I believe that facing up to it with a degree of realism will assure you a far gentler journey in the weeks and months ahead. None of us will live for ever - but our right should be to a dignified and loving passage in those last months.

  • Hi PMPro, I appreciate your response, however, having volunteered at a hospice for 10+ years I know that my mum is certainly not at that stage and she categorically is not giving up (her own words). She is however, very fed up of not being able to get around and has increased pain in her knees and lower back when she does mobilise (even through to the bathroom). She admits she feels she is a burden to my dad and I although she is also aware that we completely disagree with her. We never force her to do anything and she says herself she wants to get back to going out visiting and for overnight breaks with my dad and I to hotels which we were doing until this last problem raised its' ugly head.

  • In that case you are well aware - I'm sorry, had I known that I wouldn't have posted.

    Fatigue - the lack of energy - is such an integral part of autoimmune disease of all sorts. Most of us would like a prescription for "more energy"!

    The low back and knee pain sounds sounds as if it could be a muscular problem - but I would expect a good physio to pick up on that. Have you heard of Bowen therapy? Many of the people on the PMRGCA forums have benefited when they had extra low back pain. It is very gentle and can sometime achieve excellent results with mobility. One lady in her late 70s struggled to get to the bathroom with a zimmer frame, much like your mother. She struggled from the car to the therapy room with a friend and a walking stick. An hour later she walked back to the car - and realised she'd forgotten her stick! It took a few sessions to really sort it out - but that initial improvement was like a miracle to her.

    And as Keyes points out - there may be a second problem that has developed.

  • Hi PMPro, I have not heard of Bowen therapy but will follow it up and see if it is available nearby to source. Thank you.

  • I agree with you, not PMPro.

  • Hi Sandra,

    has your mum ever had a physio or Occupational therapy referral? If her Consultant feels that her MPA is under control then that should be the next step. Has she tried analgesia for symptom control?

    If her appetite is diminished and she is losing weight then her symptoms may need further investigation via the GP. It's not inconceivable that she has developed another illness causing these symptoms, the natural thing is to attribute it to the MPA but that may not be the case.

  • Hi Keyes, Yes Mum has a physio that visits weekly and is working hard with her to improve her mobility. I think her lack of appetite is due to her reduced mobility as she is still eating but not as much as she usually does, she is not losing weight. She had a fall a week past Tuesday which put her confidence in the gutter and she had Tramadol for the pain but they were making her really nauseous but she cannot take codeine so it was a case of tolerating the nausea until the pain from her fall subsided. Since ever she was diagnosed in May 2014 she has always said to her consultant could she have a prescription for energy.

  • I won't take Tramadol because doctor daughter says it is addictive and only take Paracetamol or in extreme cases Cocodamol.

  • I was desperate last year having a return of my MPA and symptoms like your mum - I am 77. Then I was given Rituximab last March and it was like a miracle! Please tell her to ask her consultant for this treatment. There is light at the end of the tunnel!

  • Thank you Compo34, I have spoken with my mum's GP today and will contact her consultant to ask regarding Rituximab treatment.

  • Good! It is expensive and it will depend on whether your Primary Trust will pay for it. I was lucky; I have a wonderful consultant. Where abouts do you live?

  • We are within NHS Tayside in Scotland, but I will certainly ask. Thank you

  • Hi Sandra,

    I am in Scotland as well, just down the road from you in Forth Valley.

    The Scottish Medicines Consortium ( SMC )have approved Rituximab for ANCA associated Vasculitis ( GPA and MPA ) but only under certain conditions. Unfortunately the SMC website is down at the moment otherwise I would have posted the link. If the Consultant thinks your Mum's MPA is in remission then she won't qualify for Rituximab as its only used for active disease. Are you happy with your Mum's treatment overall and do you have faith in her Consultant?

  • The link to the criteria for Rituximab in Scotland.

    scottishmedicines.org.uk/fi...

  • Good luck with that. Scotland seem very good on health (see Keyes) I am way down South West or I would have liked to support your mum. Give her a hug from me, I'll be thinking of her! Let us know how she gets on.

  • I have churg strauss syndrome and have had a lot of mobility problems. i would get your mum to see a really good physio - it may be worth paying privately as nhs phyios have so little time with patients. she could also try accupuncture which has helped me in the past. If she has nerve pain its worth taking amytryptiline and pregabalin. She could also see the mobility team attached to your hospital who make aids to help people walk and special footwear etc - i do hope she improves

  • Hi Katie18, mum has seen the TORT centre staff and has a shell support for her right foot as she was walking on the outside of her ankle and this has successfully cured that. Thank you.

  • that's realy good news.

  • Just had a quick thought, has your mum had a DEXA scan to check for oesteoporosis?

    High dose prednisolone can " strip " the bones very quickly especially as we get older. It can be incredibly painful and make it difficult to mobilise.

  • True, it happened to me.

  • Hi Keyes, Mum had a bone density scan and the consultant was happy with the result of it, however I'm not sure if that is the same as a DEXA scan? Perhaps you could let me know please.

  • Yes, a dexascan is a scan to measure bone density - dual exposure X-ray absorptiometry to give it its full name!

  • Cheers! 😀

  • Hi I had MPA, 2007, I would fall asleep, mid conversation & sleep much of the day.

    After a year, my mobility was next to nil, I had osteoporosis caused by the Pred .

    Make sure your Mum has regular bone scans, also an eye kept on iron, low iron can add to the Fatigue.

    Her treatment sounds very similar to mine, and now in 2016 age 72, I have a good life, yes my walking is just a few yards, but I can cook, "My wife might not agree with me there" , I still sometimes have to rest after getting up & having breakfast, Most afternoons I have a sleep, I'm happy, I just trim my life to how I feel.

    Your Mum will go through it I'm afraid, but there is a light at the end of the tunnel.

    Oh yes ask to go on renal patient view, it will give your Mum some feeling of control.

    All the best to you both, & have a happy new year

    Tony

  • Sandra, so sorry for your mom's issues. I don't know if hers are similar to mine, but here is my story in a nutshell.

    I'm 65 and was diagnosed with MPA in June 2015. In December, I had a cold, then as that cleared, I started to feel weak and light-headed, coughing a lot, especially in am and pm. I became very unsure on my feet and was worried I'd fall when walking any distance, even to the bathroom or the car. (I'd had similar mobility symptoms at the time I was initially diagnosed and once or twice since.) I was diagnosed with pneumonia and given oral antibiotics. The next morning I had a bronchioscopy. Was admitted to the hospital for 2 days and ended up giving me IV fluids and a blood transfusion. I immediately felt better and in very short time I was walking easily. Within 2 weeks, I was walking over three miles and began adding hills to my walks. I'm feeling better than I have in a year, and have begun gaining weight.

    Unlike your mother, I didn't have pain when walking, only breathlessness and lightheadedness, so it may be a very different concern. I don't know which part of the treatment helped the most, but I suspect a combination. Certainly healing the pneumonia was a big deal, but I'd guess the transfusion helped too. I'd had low RBC etc since diagnosis, but it hadn't been a focus until this event. After a number of tests, my doc has determined that I'm creating RBC's normally, but that something is destroying them. He's currently assuming Dapsone (prophylactic for cyclophosphamide) might be the culprit and I've been off it for about 2 weeks.

    Other factors: I've just gone into remission, moving from cyclophosphamide to azithropine Dec 3. Prednisone was originally at 60- mg, but gradually reduced to 5 mg. RBC was 2.31 just before admit, 3.49 a few days after transfusion, 3.54 (normal!) now.

    Dr. has asked me to consider Pentamadine as prophylactic in lieu of Dapsone. I'm apprehensive and will see what CD4 lymphocytes look like today before deciding, as I understand CD4 levels are expected to increase as cyclophosphamide washes out of the system. They were 197/CMM (31.9%) on Jan 4 - retesting today.

    Reading this blog for several months, I realize how lucky I am that my MPA was diagnosed early and my symptoms have been mild. Affected my kidneys, but not my lungs or other organs. Definitely a learning experience :)

    Best of luck -

    Pam

  • I had cyclophosamide and then azathiaprine and prednisolone like your mum , I was improving but when I started the Azathiaprine I went down hill and then I struggled to walk and had severe fatigue and nausea .

    After many clinic appointments and even though my blood results looked good , they finally stopped Azathiaprine and put me on mycophenolate. Since then I have improved alot.

    I am so pleased my meds where changed. I still have bad days but I try to pace myself and rest before I get exhausted.

    My advice is for your mum to keep telling the doctor her symptoms and I know she will eventually get some help.

    I wish your mum a speedy recovery.

    And hope she gets all the help she needs.

  • Thank you so much for this information Kirsty, it is hugely helpful and when we see her consultant at the beginning of March he will wonder where all the questions and information has come from but I will certainly make sure he takes notice. My mum has always complained about the biggest problem for her is fatigue and looking back it has been since she went from cyclophosphomide to azathioprine so that will be top of our questions. Please may I ask how long were you on azathioprine for before they changed you on to mycophenolate?

  • Hi sorry for the delay.

    I was Azathiaprine for 5 months.

    I hope you get a good response and the right action is taken.

    Please send my thoughts to your mum and tell her she's not alone as I completely understand her symptoms as I have had them.There is light at the end of the tunnel.

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