Another newbie

Pickleli11y
Pickleli11y Member Posts: 9
edited 19. Feb 2017, 13:08 in Say Hello Archive
Hi everyone,
I have had psoriatic arthritis for many years now and it's easier to say where it isn't rather than where it is !
I have spondylolithesis (L5/S1), often suffer bursitis and have peripheral neuropathy which was caused by one of the meds given to me to help my arthritis :(
I'm about to embark on the PIP process, so will be very interested to see how others got on.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I too have PsA which began twenty years ago in the wrong place (which was less than helpful when it came to diagnosis). Over the years I have also acquired OA and fibromyalgia which isn't fun, the PsA is well-controlled by the combination of injected meth and humira but of course they have no effect on the other two, well not for me!

    I am sorry to read of your current situation, I have no experience of bursitis or peripheral neuropathy but am fortunate in that I was accepted for a lifetime higher rate mobility DLA long before PIP came into being. I know I will be transferred at some point to PIP so I can't be of much help on that front but if you have a look at the thread titles on the Benefits and Working matters board here I am sure you will find others' experiences.

    I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,309
    edited 30. Nov -1, 00:00
    Hello and welcome from me too :D

    I have RA rather than PsA but they're close cousins :wink:

    I've never heard of spondylolithesis so I had to look it up on NHS Choices. I presume it's the PsA that caused it. Or are you part of our not-so-special band who have managed to achieve two types of arthritis, OA being the add-on?

    May we know which med gave you peripheral neuropathy? I'm rather keen to avoid it :wink:

    As DD has said, the Benefits and Working Matters forum has lots of threads on PIP. Some were successful and others not. I believe at least one person detailed her (?) experiences in full. I wish you luck with it.
  • Pickleli11y
    Pickleli11y Member Posts: 9
    edited 30. Nov -1, 00:00
    Hello and welcome from me too :D

    I have RA rather than PsA but they're close cousins :wink:

    I've never heard of spondylolithesis so I had to look it up on NHS Choices. I presume it's the PsA that caused it. Or are you part of our not-so-special band who have managed to achieve two types of arthritis, OA being the add-on?

    May we know which med gave you peripheral neuropathy? I'm rather keen to avoid it :wink:

    As DD has said, the Benefits and Working Matters forum has lots of threads on PIP. Some were successful and others not. I believe at least one person detailed her (?) experiences in full. I wish you luck with it.

    Hi SW
    The cause of my peripheral neuropathy was Leflunomide (Arava) which I have complete with Parasthesia and Dysaethesia - something else to look up ;)
    I was ok on one tab a day, but doseage was increased to two and it all went horribly wrong. I fell out of the hospital system as they kept cancelling my regular 6 monthly appointments and then because I hadn't been for 2 years they took me off their lists. Somewhere along the line I lost the sensation in my toes and put it down to permanently wearing Birkenstocks as that's all my poor feet can tolerate, then the rest of my feeet went and then it started creeping up my legs. I tripped or fell over quite a lot and my legs would feel either cold and dead or as I'd I was standing in a fire with flames licking my legs. I eventually got back to see my Rheumy (the same man who prescribed Leflunomide) who asked me three times during my consultation if I was diabetic, not once did he examaine or touch me. He changed nothing and said he'd see me in 6 months.
    A few weeks later I'd lost the sensation up to my knees and was scared as hell as 'Google' told me I was dying from the feet up!!
    I waited a few more weeks to get an appointment with my GP (we only have locums) who's first comment was that can be a side effect of your medication !! He sent me to a different Rheumy who carried out a very thorough examination (which included a tuning fork) and he took me straight off the drug and I had to have a 'chemical washout' to remove the drug as quickly as possible and then had to go cold turkey for 3 months with no meds..... I was put back on sulfasalazine and the bit of feeling I had recovered in my legs and feet I lost again, so that was stopped. I'm now on methotrexate- I've had 3 doses and I'm not liking it much, but it's early days so I'll stick with it until I see my Rheumy again in April. We don't know if my legs and feet will recover as best recovery is by stopping meds within 30 days and I had around 18 months of it. I have absolutely no reflexes in my ankles and a condition a bit like Plantar Fasciitisa, but they don't think it is ...
    As for the Spondylolithesis ... I think it's an add on
    Ain't I the lucky one !
  • Pickleli11y
    Pickleli11y Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you for the welcome ...
    I look forward to getting to know you all and being able to talk to people who have an understanding of what living with this disease is really like. I have some great friends, but if you haven't actually got it, it's not easy to fully appreciate how tricky life can be sometimes.
  • stickywicket
    stickywicket Member Posts: 27,309
    edited 30. Nov -1, 00:00
    Ah well, the good news for me is that I won't be getting any lef side-effects as I've already been on that many years ago :D And I hope also to remain in ignorance of Parasthesia and Dysaethesia and even Birkenstocks which I assume are some kind of shoe / sock. I can only walk in surgical shoes.

    If the hospital struck you off their lists for non-attendance when your non-attendance was simply due to them cancelling all your appointments that really is a case for PALS to investigate. However, you now seem to have a better rheumatologist (in a different hospital?) so maybe you'd prefer to just put it all behind you.

    It's quite common for us to have to let one med completely out of the system before starting another. Not good, but necessary. What are your problems with meth? It works very well for me. Some people can get nausea with it but that can often be sorted by taking it last thing at night or by upping the folic acid - only with the rheumatologist's say so though.

    I hope you'll find things start to improve, arthritically speaking, once the meth kicks in. Sorry, I can't help with the rest though. Do you a consultant for it?
  • Pickleli11y
    Pickleli11y Member Posts: 9
    edited 30. Nov -1, 00:00
    I do have a much better rheumatologist now but may still write to the old one just to make aware that I was suffering symptoms of a drug, so he may recognise it in someone else and save them the pain and discomfort of neuropathy..... we'll see.

    Methotrexate seems to have a whole host of side effects. The first two doses gave me really unsettling freaky dreams ?
    I take it around midday and feel ok until about 9pm when I feel a bit queasy and tired so I just go to bed early.
    All doses have made me feel as though my blood is hot as it travels around my body like a burning under the skin the day after I take it. After one day of that the burning settles in my legs and feet for another day or sometimes two days, which I'm thinking is because of the neuropathy.....
    stomach cramps the day after taking it and real fatigue.

    Are all these normal ?

    It's early days and i know sometimes side effects lessen or stop, so I'll try and stick with it until my next appointment in April.
  • stickywicket
    stickywicket Member Posts: 27,309
    edited 30. Nov -1, 00:00
    The fatigue is very normal. I find it annoying as I don't get it every week, just occasionally, and so it usually takes me by surprise. Annoying but self-limiting, umlile the awful fatigue of a flare.

    Queasiness is fairly routine too. A higher dose of folic acid might sort it..

    Dreams? I don't recall anyone mentioning this in relation to meth. Are you on strong pain relief?Vivid dreams / nightmares are a commom side effect of that.

    As for the burning etc, I'd guess it's more to do with the neuropathy. You could try putting a thread on LWA to see if anyone else has experienced it.

    Why not ring your rheumatology helpline? They could certainly up your folic acid to see if that helps.
  • Pickleli11y
    Pickleli11y Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you, I'm not aware of a help line attached to my rheumatology dept - I'll have to see if my consultants PA can help.
    And I will post on LWA to see if anyone else is familiar with the burning.

    The dreams are definitely connected to the meth ...
  • stickywicket
    stickywicket Member Posts: 27,309
    edited 30. Nov -1, 00:00
    Your rheumatology dept should have a helpline but, in these days of cuts, who knows? Yes, do ring whoever you can and please let us know how you get on.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hello there, I've just caught up with your thread and am interested to read about the leflunomide problems. I recently started leflunomide and am having some interesting side effects, but mostly of the digestive kind! May I ask how long you took the meds for before the problems began, and what the early indications of a problem were?

    The rheumy team feel it may be increasing my blood pressure and affecting the white blood cells, so I've no idea if I'll stick with it, but I don't cope too well with methotrexate so I'm hoping it will be ok.

    In terms of methotrexate, if you can inject it, it tends to have less side effects, and as others have said, extra folic acid helps a lot. I found that injecting at teatime usually meant that I was asleep before the nausea kicked in, but the fatigue always wiped me out for the whole of the next day.

    The variety of meds we take are potent and full of potential side effects, but if your new rheumy is on the ball hopefully things will be much better controlled for you now.

    Deb x
  • Pickleli11y
    Pickleli11y Member Posts: 9
    edited 30. Nov -1, 00:00
    Hello Deb,
    In the early days of Lef I had to have regular blood pressure checks because it is known to raise blood pressure. For me the raise wasn't a problem because mine is usually very low and even with it rising I was still within usual parameters.
    I must have taken it for at least 18 months on the lower dose with no real problems, but it wasn't proving very effective so my consultant doubled the dose. With hindsight, I think at that time he should probably have looked more at my pain relief .... but
    I had several flares while on Lef which I suppose is why he increased the dose. I think I acknowledged a strange feeling in my toes after about 3 months of the increased dose. I have to wear Birkenstocks pretty much all year round which involves toes gripping the shoes like flip flops so I thought it was something to do with that. The movement up my feet was slow so it was a while before I realised the balls of my feet were also feeling odd and I tried hard to convince myself it was all in my imagination.

    Thank you for the advice on Meth ... I'm going to stick with it until my April appointment then ask about increasing the folic acid as currently I only take it twice a week at 2 and 4 days after Meth

    Julie
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Lef gave me crippling headaches rather than do anything about the arthritis so that was soon kicked into touch. My BP has gone up thanks to the humira I inject so I am now on BP meds to reduce it. I have no doubt that the effectiveness of the humira won't last for ever so once I'm off that I hope the BP returns to normal of its own accord.

    We walk narrow and difficult paths don't we? We take one thing to help one trouble and if we're unlucky, cause another. I learned early on that this game does not involve winning, rather one loses to the least detriment possible. DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks for the shared experiences. Happily a quick visit to the GP has reassured me that the BP isn't too bad so I can stop worrying on that score, but for the next week at least I'm off all DMARD's as I've developed a dreadful sinus infection and have antibiotics, which kind of ties in with the Lef reducing my white blood count.....so I guess I'm back in the "watch this space" mode for the next little while trying to work out whether it's a drug I can stick with, I've had a really sore gut for a week now which is unusual for me, but I'm not sure whether it's related to the meds, the antibiotics, or the infection....wouldn't it be joyous to have just one thing wrong that could be treated with just one medication and no side effects! :? but I know I'm better off than many who deal with far worse than me so for now at least I'll keep smiling-at least in public!

    Deb x