I am new here - Greetings

turtle
turtle Member Posts: 30
edited 7. Sep 2018, 20:10 in Say Hello Archive
This is my first post. I have RA , OA, scoliosis, osteoporosis, and no rotator cuffs left. The bone in my thumbs is eroding fast and the shoulder bones rub against the arm bones.

Pain and decreasing mobility and strength,

Took Paquinil for a year, not helping, have to try Meth. But it made me very sick when I tried the pill, so am hoping injections work better.

I read a lot of encouraging words here and hope I can contribute the same.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi turtle,

    Lovely to meet you, I'm thinking you must be a few years into your arthritis journey, I'm sure you will be able to help others on the route too. Maybe you will find a tip or two along the way.

    I haven't tried injected methotrexate but many who have say it does reduce sickness, as does taking folic acid.

    If you want to read back on past threads it's easy to do, just click on the search button (right hand side of the aqua block above), type in the keywords what you want to look for like osteoporosis and click search and previous posts on the subject will be shown.

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have psoriatic arthritis which led over time to osteoarthritis and fibromyalgia. I tried tablet meth years ago, it didn't make me nauseous preferring instead to give me a lovely rash all over my forearms. I began the injected version eight years ago and have no trouble with it apart from feeling extra tired once in a while a couple of days after I do the injection. I also inject humira, an anti-TNF medication, again for the past eight years.

    Both come in a pre-loaded pen and I find them very easy to use. I inject the meth into my thighs and the humira into my stomach (but not near the navel). With both I sit on my bed, legs out straight and supported with a pillow under my knees: this relaxes the thigh muscles for the meth and is more comfortable for the humira. I am one of those who has developed a roll-up-her-sleeves-and-get-on-with it mentality so it's all done and dusted in under five seconds: I don't like doing it, I don't want to do it but I recognise it is necessary to control disease activity and indeed it does.

    The medication is delivered by a company who also deals with the supply and removal of sharps bins which makes things very easy. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi turtle,

    Lovely to meet you, I'm thinking you must be a few years into your arthritis journey, I'm sure you will be able to help others on the route too. Maybe you will find a tip or two along the way.

    I haven't tried injected methotrexate but many who have say it does reduce sickness, as does taking folic acid.

    If you want to read back on past threads it's easy to do, just click on the search button (right hand side of the aqua block above), type in the keywords what you want to look for like osteoporosis and click search and previous posts on the subject will be shown.

    Take care
    Yvonne x

    Many thanks! I cannot find a Search button, though - I looked carefully. About the injections: mine will not come pre-filled. They will be a syringe and a vial lasting for four treatments. Doing this kind of injection rather intimidates me. The nurse will show me how. I would much prefer a pre-loaded pen.

    I am so glad I found this forum.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello and welcome from me too.

    Right. First things first. The search button. If you look at the pale blue menu above, underneath the larger grey one. The search button is towards the right, just before FAQS.

    You seem to have picked up a lot of problems in a short time. Did you have the OA, osteoporosis and scoliosis before the RA? I got my OA because modern DMARDS weren't around back then so my RA was treated with just anti-inflammatories and the odd burst of steroids for years.

    I've been taking Plaquenil (hydroxychloroquine) and methotrexate for about 18 years now and, together, they work well for me but I've never had to do injected meth. I think mostly it's in pen form now. I hope you'll get on well with the syringe. Please let us know how it goes.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    Hello and welcome from me too.

    Right. First things first. The search button. If you look at the pale blue menu above, underneath the larger grey one. The search button is towards the right, just before FAQS.

    You seem to have picked up a lot of problems in a short time. Did you have the OA, osteoporosis and scoliosis before the RA? I got my OA because modern DMARDS weren't around back then so my RA was treated with just anti-inflammatories and the odd burst of steroids for years.

    I've been taking Plaquenil (hydroxychloroquine) and methotrexate for about 18 years now and, together, they work well for me but I've never had to do injected meth. I think mostly it's in pen form now. I hope you'll get on well with the syringe. Please let us know how it goes.

    I have had osteoporosis for many years, scoliosis the same. I have broken many bones over the years.

    Right now, I am alarmed because my thumb joints have eroded, and they come out of their sockets.

    Can RA progress very rapidly? I seem to find yet another joint either affected or getting worse.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    You took plaquenil for a year and have tried tablet meth so must have had RA for well over a year. That is ample time for it to spread into other joints especially if the DMARDS you've tried are not controlling it. I do hope the injected meth works.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    You took plaquenil for a year and have tried tablet meth so must have had RA for well over a year. That is ample time for it to spread into other joints especially if the DMARDS you've tried are not controlling it. I do hope the injected meth works.

    Yes, it's all over my body - neck, wrists, hands and fingers, neck, shoulders.My shoulders are almost the size of baseballs, can't use one arm.

    Not complaining - it is what it is. If someone had told me years ago that I would be able to tolerate this, I would have said a big NO. WE humans can adapt to the once-unimaginable, though. I admire everyone here who is coping with this illness.

    For for first time, I don't feel so alone. Grateful for the forum.

    Thank you for answering. I hope you are doing as well as can be expected.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Given the trouble you have with your hands it may well be that the syringe option for the meth will be preferable to the pen. I began with syringes when I was given the early version of Enbrel, and anti-TNF drug. I had to mix it with water, shake the phial, wait for the flakes to clear then draw it into the barrel. I went to the hospital for my training but opted not to bother injecting their orange with water, 'in for a penny in for a pound' was my thinking (and diabetics do it every day) so I did myself, much to the nurse's surprise. You're right, it is surprising what we can cope with when faced with a challenge.

    I have a touch of OA in my wrists and the PsA affects my fingers but I am able to get on. It's all worse at the other end, my toes, ankles, knees and hips are miserable, some with one, some the other and others with both but I don't have to be! :) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Well done on managing to adapt to the rigours of arthritis. It can take some doing and, although it makes us very versatile in our thinking, it's just unfortunate that we have to do it.

    I, too, have arthritis in most joints but it's a bit worrying that you can't use one arm. I find the more places that are affected the more we need to keep everything in as good a working order as possible. Some of my finger joints have fused, some are hypermobile, my wrists have fused and my elbows and shoulders have little movement. This means that the tasks that others perform with one hand (one finger in some cases :lol: ) take both of my hands and a lot of careful balancing. On the 'use it or lose it' basis I exercise to keep what movement I have and you might well find the AC pages on exercises very useful.

    Do you use aids for regular tasks such as washing, dressing, eating etc etc? There is some very useful stuff out there in any disability shop including online ones.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    Well done on managing to adapt to the rigours of arthritis. It can take some doing and, although it makes us very versatile in our thinking, it's just unfortunate that we have to do it.

    I, too, have arthritis in most joints but it's a bit worrying that you can't use one arm. I find the more places that are affected the more we need to keep everything in as good a working order as possible. Some of my finger joints have fused, some are hypermobile, my wrists have fused and my elbows and shoulders have little movement. This means that the tasks that others perform with one hand (one finger in some cases :lol: ) take both of my hands and a lot of careful balancing. On the 'use it or lose it' basis I exercise to keep what movement I have and you might well find the AC pages on exercises very useful.

    Do you use aids for regular tasks such as washing, dressing, eating etc etc? There is some very useful stuff out there in any disability shop including online ones.

    Gosh, you are pretty handicapped by this, too. I can dress, shower with difficulty. Eating - I can't cook, have Meals of Wheels ( sometimes okay, sometimes not) and small portions. I eat mostly salads (no cooking), cereal, pb, cheese and cottage cheese, fruit, supplements - and lots and lots of ice cream!

    How long have you had he RA? Do you take anything for it?

    I just have a grabber and jar/bottle opener. I'm lucky enough to have Bayada aides who do most of the cleaning, garbage removal, carrying groceries. I'm on Chronic Long-Term care, a program designed to keep me out of nursing home. It's called Dying in Place.

    I was alarmed today when shopping (with an aide) to realize I cannot climb on to a high curb without falling (I also have chronic anorexia, so can be very weak.) My four cats keep me going.

    You know, just writing all this down makes me appreciate people like you and me. We go forward with such difficulty, yet we do go on.

    Best to you, hope today was tolerable for you.

    BTW, do you drop things a lot? I am always dropping something, it seems.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    turtle wrote:
    How long have you had he RA? Do you take anything for it?

    My goodness yes :D I've had it for 58(?) years and can't imagine how life would be without DMARDS. They weren't available in my early years of RA which is why I am so deformed. For the last 18 years I've taken methotrexate and hydroxychloroquine and what a difference they make!

    I get the impression from things you write that you don't live in the UK. (Bayada? Dying in Place?) I have a son in USA whom I visit regularly and can appreciate the kerb problem. I wobble dangerously on ours :lol: but, in USA, they tend to be higher so I usually need a steadying hand. (But I adore Trader Joe's salads :D )

    As for dropping things - yes, I have days when I seem to drop lots of things for no obvious reason. Mostly I can pick them up with my grabber but heavier things are beyond its capabilities so I leave them for Mr SW :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    turtle wrote:
    How long have you had he RA? Do you take anything for it?

    My goodness yes :D I've had it for 58(?) years and can't imagine how life would be without DMARDS. They weren't available in my early years of RA which is why I am so deformed. For the last 18 years I've taken methotrexate and hydroxychloroquine and what a difference they make!

    I get the impression from things you write that you don't live in the UK. (Bayada? Dying in Place?) I have a son in USA whom I visit regularly and can appreciate the kerb problem. I wobble dangerously on ours :lol: but, in USA, they tend to be higher so I usually need a steadying hand. (But I adore Trader Joe's salads :D

    As for dropping things - yes, I have days when I seem to drop lots of things for no obvious reason. Mostly I can pick them up with my grabber but heavier things are beyond its capabilities so I leave them for Mr SW :wink:

    Yes, I live in the US (at the moment, things politically being what they are, I would prefer to be ion the UK, which I loved when I lived there for a while).

    I managed to drop all my mail today in addition to my money in the store. My cat contributed by knocking a full cup of coffee onto the floor with his tail.

    There is skunk who slips into my garden at night and a woodchuck who is eating all my beans. I barricaded the fence against the skunk and have to hunt around to find the woodchuck's tunnel.

    My back is full of painful muscles tonight. They get confused by the change in bone structure. But it could be worse.

    Take good care now.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    You have brought back memories. I think the first little tune I learned to play on the piano had the words "If a woodchuck could chuck wood. How much wood would he chuck?" I'd no idea what woodchuck was back then but I liked the tune and the play on words.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    You have brought back memories. I think the first little tune I learned to play on the piano had the words "If a woodchuck could chuck wood. How much wood would he chuck?" I'd no idea what woodchuck was back then but I liked the tune and the play on words.

    The version I knew was 'How much wood would a woodchuck chuck if a woodchuck could chuck wood'
    Animal in question is a groundhog or marmot.
  • turtle
    turtle Member Posts: 30
    edited 30. Nov -1, 00:00
    daffy2 wrote:
    You have brought back memories. I think the first little tune I learned to play on the piano had the words "If a woodchuck could chuck wood. How much wood would he chuck?" I'd no idea what woodchuck was back then but I liked the tune and the play on words.

    The version I knew was 'How much wood would a woodchuck chuck if a woodchuck could chuck wood'
    Animal in question is a groundhog or marmot.

    Love that! Woodchucks are cute little animals. I also love the toads and little garter snakes in my garden. I rescue them from the cats.

    Do you have a cat problem there? Here, there are more than a million strays, abandoned and feral cats. Not neutered, so many more kittens. I found one of mine as a tiny kitten in a paper bag in a dumpster.

    On the positive side, there are many organizations working to rescue cats and find them good homes. There is a large animal shelter in town, too. Curious that dogs are not treated so cruelly

    I hope you're feeling all right. For me, it's been a tough day. The aide who usually helps me has not shown up for 2 days, leaving cleaning, laundry, garbage in my hands. I did what I could and am paying for it. All the fingers in my left hand are suddenly ttiffer and go out of joint. I called the rheumy, will see him on the 19 and try the methotrexate injection then.

    I am thinking that I have to move. The cats, the large apartment to maintain, the lack of any neighbors and the housework are too much for me now. I don't want to admit I have to have more assistance. How good it will be if I just quietly and graceful that.

    As always, take good crea.