Hi guys, I can't believe I couldn't bring myself to do this post sooner, but I became very disheartened and depressed after the Pain management visit. The Prosorba column
is a device which filters harmful immune complexes or antibodies from a
patient's blood. The actual Prosorba column itself is a small cylinder
made of plastic about the size and shape of a small soda can. Apheresis
involves the collection of whole blood from patients with subsequent
separation of its blood components. It is used to remove a specific
component from the blood. The Prosorba column, which is also called
"Protein-A Immunoadsorption Therapy", contains a sand like substance
coated with Protein A, which has the ability to bind antibodies. According to the American College of Rheumatology (ACR), "it
consists of an inert silica matrix to which a component of
Staphylococcus bacterium is covalently bound. Each treatment takes approximately two hours and is done weekly for
a course of 12 weeks. During the treatment, the patient's blood
channels through tubing attached to a catheter in the patient's arm and
passes into the Prosorba column. Another apparatus attached to the
column serves to separate plasma from red blood cells. The plasma is
then filtered through the column, which is a plastic cylinder
containing highly purified Protein A on a silica matrix. Protein A
binds to antibodies in the plasma. The plasma is then combined again
with the red blood cells and reinfused into the patient through another
catheter in the opposite arm. The Prosorba column has proven safe and effective for treating
moderately severe, active, treatment resistant rheumatoid arthritis.
According to Dr. Raymond Federman, "Although the precise mechanism of
action is not known, it is felt that absorption of immunoglobulin
occurs, binding the unwanted autoantibodies that attack the body in
rheumatoid arthritis patients. Short-term relief has been demonstrated
by early studies, but long-term benefits have not yet been established." The Prosorba column is not a first line therapy option, and is
usually only recommended for rheumatoid arthritis patients who have
failed conventional treatment with/or are intolerant of DMARDs (disease-modifying anti-rheumatic drugs). Oh Janie, my heart goes out to you and I wish there was something I could say to help lighten your load. It is only natural for you to be grieving for things you possibly won't be able to do in the future, so allow yourself this grief but don't give up. Have you retried some of the biologics again, but without some of your other long term meds? Do you have a spa bath or tub? I have a spa bath, and although it doesn't take away the pain at the end of the day, it does help relax your muscles which makes you feel better. A good dash of scented Radox in the water also helps lift ones spirit.
I feel able to face it now, but I have cried for 3 days.
I had already done a pain management course and myself and my GP were not very impressed with the treatment, my pain she said is heavily resistant to treatment so I saw a private pain management specialist and we felt sure between us that he would give me some nerve blocks etc to help control the pain, from OA, RA, FM, DDD and costochondritis.
Anyway off I went and stayed the night in Brisbane as its too much to travel in and out in one day for me now. So I was up nice and early, went and had coffee and raisin toast with MIL who kindly accompanied me.
The specialist was very nice and he spoke to me about my history of operations, pain management etc etc.
He then asked me to state from the neck down where I was hurting, no need to tell you, it was everywhere basically, so he asked me to stand up and he checked every level of my spine, I didn't even realise the pain was in every joint that he touched, so he sat down and said, I can't believe it, you have pain and inflammation absolutely everywhere.
I was shocked to think that he was shocked and I became very frightened then of my prospects for the future. I mentioned all of my allergies and intolerances to DMARDS, BIOLOGICS, NSAIDS etc etc. He then said there was absolutely nothing he could do for me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
Well that was it I was in stunned silence and asked him to explain why not? He said that if it was a knee, or one area of my spine etc it would be fairly easy to treat but because the pain is so widespread he couldn't possibly take my pain away. I then asked him if I could try the Buprenorphine sublingual tablets as a last resort as the Buprenorphine patch had worked fairly well but I was allergic to the glue and possible the medicine entry area. He said normally they only prescribe this for drug addicts detoxing from Heroin, but that I was right it is also used for moderate to severe pain, he said of course he would prescribe it for me as he felt awful that there really wasn't a solution. It is incredibly difficult to get unless you are an addict so he said not to worry he would contact the government Minister for health and get me the drug. I thanked him and he even knocked off of my bill which was a great help. I have to wait for my GP to come back on the 12th May and she has to then contact him for the script. He said if I have any particularly worse areas at any given time then of course I could have pain relieving injections of steroids for the inflammation. I came home on the train journey for 3.5 hours, and I was so low, I was scared to be on my own so I asked hubby not to go to soccer training and to please stay with me, thank God he did as I could not stop crying, I felt desperately sad and confused. He nipped out quickly while I was in the shower and bought me my fave chocolate and a bottle of coke, He is such a sweetheart, I had lots of cuddles from my boys and felt better.
So there you are, my spine is absolutely stuffed and my S.I. joints, my coccyx, and every other joint in my body including my jaws. I am still in shock to think that it is worse than I realised and what the hell am I going to do if this drug doesn't work and of course as I get older, stiffer and sorer?????? I am trying not to think about it and take one hour at a time as that is how volatile this migrating pain is, sometimes it forgets to leave when another joint starts and I fell like a cripple, so I retreat to my electric blanket and feel sorry for myself. I really do not know what else to do anymore. Thanks for listening guys, always, Janie.
oh my, Janie.. I am so sorry you have so much on your plate... and you have so much pain. gently.
I am surprised that the doctor felt at such a loss about the whole thing and basically said, well, there is NOTHING I can do at all. That has to make a patient feel depressed. And the depression is what is getting to you, girl. You will have to find a way to get your mind around this somehow, past the depression to feel your way through here because giving up is not an option.
Meanwhile though, I am not going to tell you to hang in there or hope you feel better. Personally, I think you need to grieve. Cry your eyes out and smash plates from the thrift shop for anger therapy. I think you should allow yourself some time to be miserable, down, sad, despairing, anger and fed up. You need to do that and it's going to take what it's going to take.
But then I know you ARE going to pick yourself up, get off the electric blanket and not give up here. There are two little boys and a hubby that need you to keep going.
In the meantime, if you still have your childhood teddy bear or the like, I suggest you find it to join the electric blanket pity party for a bit.
Love ya, Janie.
I'll send up some prayers. Should be someone who could stand in for your doc, but I don't know who.
Mike
OK, it's clear there's nothing HE can do. I don't buy for one minute that there's nothing anyone can do. You just haven't found the right doctor yet. It's totally understandable that you're frightened and saddened by this. Who wouldn't be? But I've come to learn that you're also very strong and that strong part of you is going to do some research and find another doctor to help you. I'm reminded of one of my favorite shows "Medical Mystery" where it often takes time to get a diagnosis. You have your dx, now you need help. In my heart I believe there's a doctor out there who can help you. Like those patients in the TV show, they had to be diligent, had to keep plugging away until they got the answer they needed. In this day and age, I can't (don't, won't) believe that there's nothing to be done for you. Don't give up. now the same stuff,
morphine is taken in a different manner, but the quantity is
drastically reduced- just one milligram per day. This is done with
the help of intrathecal spinal pumps.
The
medicine reaches the spot where it is exactly needed. The medicine is
given by implanting surgically a pump under the skin of a person's
abdomen and running a catheter to the correct location in the spine,
in the pain giving area. The medicine thus, provides instant pain
relief and the dose of medication is reduced drastically.
Ason date, chronic back pain sufferers, admit that they are benefited a
lot, with morphine through pump method. In the times to come, you
will hear more opinions about the utility of this system.
i to am having a lot of reactions to meds. lately it is generics..
i have asked my hospital about prosorba column. they said pro.-what..
here is some info..
A. What Is The Prosorba Column? What Is Apheresis?
Prosorba Column Treatment
Which Rheumatoid Arthritis Patients Are Good Candidates For The Prosorba Column?
Hi everyone, as usual you are all so supportive and kind, I know I don't get back to you all individually, but I have a mental note of you all and I know who my friends are, I wish you all the same as you wish for me and more. God Bless.
I am back on the oxycontin for now and if I do nothing physical or very little, I can cope until I get breakthrough pain, then I am at a loss, I have heard of the prosorba column Boney and asked my RD about it, he said if it had been tried in Australia, he would give it a go, but he is very nervous of things like that. I know about the intrathecal pump and wondered why the specialist could not do that but he said he will never get rid of enough pain to make a difference, I don't agree with that and when my GP comes back, I have a few questions for her to ask him for me. Now my thoughts are, even if I get lucky and find something to deal with the RA, my major pain at present is coming from the OA, and that is something I have to learn to live with????? Oh well, I will keep thinking and praying and again thankyou all of you, there is a special place in my heart where you all belong. Your friend Janie.XXX
Please take care. _popupControl();
I can't tell you all how much you are helping me, I feel like a computer addict but I tell my husband, this is my therapy!!!! Thanks Whispered again for everything, and don't worry, I shall be retrying with as much optimism as I can. Midgimoo, thankyou so much for your care and concern, I hope I help all of you out at times as I don't know if I am too helpful to anyone sometimes. ha ha Thanks too to you paperdoll, not knowing what to say is fine, if the Drs don't know what to say or do, how can we? Cheers everyone, love Janie.XX
This is not a pleasant thing to be dealing with and I can only offer you healing karma.
Thanks Steve, you always brighten dull days, hugs Janie.XX
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