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Success with Sulfasalazine

Discussion in 'General Treatment' started by Jill, Dec 20, 2013.

  1. Jill

    Jill Senior Member

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    Moderator: Please note the next 7 posts have been split from the 'Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July' thread

    Hi again,

    I have a breakthrough with Al to report. It's either he has been misdiagnosed for years, or maybe of interst/use to others esp Prof Edwards.

    After getting the terrible asthma like reaction to the NSAIDS, Al's gp decided to start him on the DMARD he could prescribe. (The hospital rheumatology had refused to see him, basically saying that they couldn't help - although I don't know why I suspect its this ME/CFS label).

    Anyway, I'm pleased to report Al is doing extremely well on Sulphalazine (Sp?). It has really helped his pain. He can now actually walk like an upright human, and the pain in his joints, bones and continual headache have also receded. He had been waking up terribly badly with what he described as a "surge" (Neurology refused to see him last year) and pain behind the eyes. After one week on the drug he is now waking more normally (although its there a bit). So!!

    He had no RF, no high ANA, no high CRP. All I can deduce (after looking at the net) is that maybe he has had ankolysing spondylitis (sp?) all this time OR maybe its some other auto immune disorder. His GP nearly fell over when he saw him the other day, and is going to be getting onto the hospital to tell them Al is no faker and he wants to know the diagnosis.

    Al has been stuck in a lazyboy for 2 years , had been declining for the last 10 and even our so called ME expert hadn't bothered trying this or doing a complete differential diagnosis it would seem.

    Al is weak ofcourse, and is just taking things slowly as its like his body is adjusting to a new norm, not to say his mind. He used to go to bed at 5 - 5.30, because he was is in so much agony and fatigue. Tonight he was up til a normal 10.30pm. That's it too - the fatigue has lifted! He said it is the weirdest thing. BOTH the pain and fatigue lift with each tablet.

    We had seen 2 rhemmies, and pain clinic where we saw some psychologist AND no-one had ever gone through what had and hadn't been tried. So, I started a list. This is all after discussing a trip to Switzerland for assisted suicide in a few months time. I was determined to pester people until we had at least tried the cheaper DMARDs and then onto Rituxan if possible.

    This is a salutory (sp?) lesson for everyone.

    I will wait a month before I write a formal piece to friends on the net, just in case this all turns to custard and he needs to be on another med, but for now it is good news. (This is 20 years too late really). When we eventually have further tests done (xrays etc) I will be able to let you know if the diagnosis changes.

    This is a terrible story of being put in a "box" and nobody questioning the label. I would have thought that every dr he saw should have been playing devils advocate - but doesn't look like it. Will keep you posted. Of course his diagnosis may not change?

    Merry Christmas everyone
     
    Last edited by a moderator: Feb 10, 2014
    snowathlete, MeSci and rosie26 like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    This sounds like wonderful news, and deserves a thread of its own.
     
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  3. Jill

    Jill Senior Member

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    Hi ,

    Just an update for those following Al's story. It is now pushing 5 weeks since Al has been on the sulphlazine and he is doing remarkably well. It is completely unbelievable. On the 7th Dec I wheeled him to his nieces wedding in a wheelchair in agonising pain/fatigue - we arrived late and left early. He had been going to bed at 5.30pm for the last two years and unable to work of course for the last 15 years. Today he walked with me walking the dog this morning, then we potted up rhubarb plants, shifted other plants around the garden, chatted to my folk and our neighbours (all without that adrenalin overload /sweating stuff). I reiterate that whilst the voltaren helped the pain, it didn't help the fatigue. This stuff helps the fatigue as well. There is one caveat : he has had maybe 3 or four days when the morning tab and the lunch tab have not lifted the fatigue. On these days he has slept it off and by evening felt rejuvanated again.
    We still don't have a diagnosis. His GP has once again written to the local hospital, as he has already been rejected by rheumatolgy in the last 3 months. His GP now says "they can't hide now", "this response means he has an autoimmune condition and *you* need to find what I'm treating". I have my suspicians after reading about arthritis. I am so angry with the rhemmie we have seen 3 times and the other general physician who just shrugged his shoulders and said he wished he could help. If Al hadn't been allergic to Voltaren and Cox 2's, we would never have tried sulphalizine. It may also have been that a rhemmie may not have either. As I said previously I will write up a proper report to be put online, but if anyone you know has pain (with fatigue) it is certainly worth going through the process of trying these meds ( and using the higher dose cox 1 slow release eg voltaren 75 mg 2x day, or celebrex), especially if you feel you are at the end of the line as we did.

    I hope this helps others. I'll check back in when we've finally seen a rhemmie. Of course Al could have an arthritic condition and ME, only time will tell. But considering the pain he can remember all the way thru since age 13 ( on and off and ALWAYS stiffness in the morning and neck/buttock pain), I'm suspecting otherwise. The other option is that we are treating generalised inflammation that could be part of ME itself.

    best Jill

    Additional notes:
    1. Al has been on the sulphalazine since 13 Dec, (5 weeks now).
    2 . He still will wake up with what he describes as a "surge" (going from the ground floor to the top v quickly). Does anyone have any idea what this is?
    3. The constant background, what we thought was the ME headache , has also gone. ( Has had this since he was 14yrs old, now 45). Migraine of last 18months - gone. Can arthritis cause headache??
    4.When I''ve looked up arthritis - the key features are often FATIGUE, MUSCLE WEAKNESS, and PAIN. We didn't know some patients find the fatigue the most disabling problem!!
     
    Last edited: Jan 19, 2014
  4. Jill

    Jill Senior Member

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    An update on Al and Sulpasaline:
    We walked 2km around a sculpture exhibition!. Have been walking a local beach every night and the dog a short walk every morn. His sense of being overwhelmed when shopping or in crowds or driving has all diminished as well. He has stopped the crazy sweating he had - he drank soooooooo much as he sweated so much. It's been hot here and he would normally hate it. He's been out chopping trees down in my garden!. The pain is ALWAYS helped. What changes is the effect on the brain/ fatigue/ whatever it is that disables us. When the brain is down - he can't function nearly as well. Its weird. If he wakes with bad stiffness in his neck, lower back and joint pain in hands , his brain is always good and he knows the drug is going to work on the other pain as the day goes on. It is weird for me because he has never ben able to come to the local burger joint, and check out the local bars - we only walked past, but it felt so good to be out. It is 7 weeks now, so I don't think this is placebo effect ( the scientist in me is always skeptical). He is both thrilled and scared. We had 3 days when the brain/fatigue wasn't helped and were paniking a tad. We now have an appointment with a hospital rhemmie in 3 months time - should be interesting ( or maybe not!). After 20 years , this is incredible. If anyone is in total pain and feels at their wits end, please pass this info on. Its worth trying anything and this is a safe drug which has been around since the 40's - not used much now for RA as there are now better things. I will try it when I se my dr next.

    Feel free to do what you want with this ( create a new thread with the story from the beginning - sorry I just don't get time.

    Love and hugs to you all, Jill
     
  5. Jill

    Jill Senior Member

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    Hi all,
    Another Al update.
    All week he has been good mentally and physically. He wakes up stiff and sore ( nothing as he says as he knows it will go by the end of the day and is localised in back fingers and neck cf with he "total" body /mind pain of the last few years). He has been able to cut down trees, go out in the car (all without "rests"), visit friends for dinner and follow conversations and not wind down like a battery toy, and not suffer consequences - no immediate effect or PEM.
    He is pretty scared, but its basically been 2 months now, but having been ill for 30 years its pretty damn unbelievable. I can't even believe it. It's humid here right now, and normally he would be wilting and lying next to a fan ( his heat intolerance was awful), but today in the midday sun he cut a tree down in his parents backyard. He says he needs to do things like that or else he starts thinking too much - what is the diagnosis?, why hasn't it been found in 30 years! despite all his parents and my effort. He hadn't been to a supermarket in 7 years and went to one the other day without being frazzled by the lights/visual onslaught etc.
    Please pass on if it will help others
     
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  6. Firestormm

    Firestormm

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    Hi Jill :)

    I am very pleased to learn of Al's progress and would be happy to start a new thread for you. Can I confirm what it is he is taking, you say it is called 'sulphlazine' is it this one - used to treat primarily ulcerative colitis:

    I could ask for your comments to be placed in the Treatments section if you like?

    Give Al our very best wishes

    Russ
     
  7. Jill

    Jill Senior Member

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    Yes, that is the medication. He takes 5 500mg tabs a day. His gp is thrilled with his progress. He has only irritable bowel type symptoms and his aren't as bad as mine, so I suspect its treating arthritis. Terrible - since he has been ill over 30 years and seen the rhemmie 3 times, who shock the fatigue off with fibro. A neurologist had him jump up and down on one foot til he cried and when he asked to be referred to someone for helped with pain the dr just grunted that nothing would help his "type". He has just mown his elderly parents lawn this arvo in 26 C heat with about 90% humidity.!! His gp is running the genetic test for ankolysing spondylitis and so we will know (kinda ) if he does have that by the time we see the rhemmie next.

    Yes, please , put the info somewhere- if it helps one other person, that will be worth it
     
  8. Jill

    Jill Senior Member

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    Hiya,

    Just another brief update.
    Al is still doing well. It seems that whilst he is so much improved, it is still like a rollercoaster (not unlike ME). He tires, but recovers now. He is able to take the dog for a walk most days and get 'out' in the car. Can also garden and fix things around the house. The fatigue is the first thing to appear and the last thing to go with the medication. It is like the med "works" to a certain level each day. It is certainly MUCH MUCH better than how he was, but in the limbo land most of us are in.

    He had the HLA b27 test and that was negative (yikes - it would have been easier if it was positive, although it is not required for a diagnosis of sero negative arthritis)

    We have a rheummie appointment next Wed - we just are hoping we see someone who will look at him with fresh eyes and not the guy we have seen 3 times before! Atleast we have his GP pushing to know what he in fact is treating and not us just "thinking" we have stumbled across something.

    Will let you know next Wed night how we get on. Is suspect we'll be sent for x rays and an mri of the hips/sacarum - well I hope we are. That would be the best outcome. Al himself is once again I think getting hopes up and I tell him not to. He really wants to find something to help and to get bak to work (don't we all!). I myself think we have a ways to go yet and it could be a very uphill battle. The rheummie team are supposed to be great. If he can be improved by the addition of another med or by using a biological then that would be sooooooooooooooooooo wonderful.

    love to you all, Jill
     
  9. Hip

    Hip Senior Member

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    I used to take sulfasalazine every day (at a dose of 500 mg three times daily) a few years ago, as I found this drug was fairly helpful for my generalized anxiety disorder symptoms. Sulfasalazine is a potent inhibitor of NF-κB activation, and in this way acts as an anti-inflammatory. My anxiety disorder appeared to be driven by inflammation in the brain, so this I think is why inhibiting NF-κB with sulfasalazine reduced my anxiety state.

    Originally I used some good NF-κB inhibiting supplements, such as curcumin, grape seed extract and ashwagandha. But don't think these are quite as potent as sulfasalazine. However, high doses of these supplements all taken in combination does seem to come close the efficacy of sulfasalazine, judging by their anti-anxiety effects.

    Sulfasalazine may reduce levels of folate in the body, so it is an idea to supplement with this vitamin while taking sulfasalazine.
     
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  10. snowathlete

    snowathlete

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    So good to read a post where something fantastic has happened. I am so pleased. And doesn't he deserve it after so long!
    It sounds very promising because not only is there improvement, but you should be able to figure out what is wrong now and there may be even better treatment options once you do.

    I know a small amount about the drug as I have ulcerative colitis. I take mesalazine for that and sulphalazine is a derivative of it. There are several other drugs in this family, all have ASA in the spelling as they all contain 5-aminosalicylic acid (5-ASA) metabolites. They are anti-inflammatory, so are used a lot in treating inflammatory bowel diseases but also in other inflammatory diseases like rheumatoid arthritis. I know that most 5-ASA drugs can be taken long term. Most people with UC end up on one for life.

    Mesalazine is generally safe, though you are supposed to monitor the liver/kidney function regularly. I suspect the same is true of sulfasalazine. Worth raising with you doctor.
     
  11. Jill

    Jill Senior Member

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    Thank you for this information Hip and will check the folate thing.
    I will look into your thread for anti anxiety as, like you, I get the wired but tired thing - and I note my dad has it too. GET was the diagnosis my gp years ago gave me b4 I saw the ME specialist in NZ. I find most people with ME have the anxiety and never no which is chicken or egg. I met people in Lyndonville and they ALL asked me "did I have *the* anxiety?". We hv a local support group here where one young girl ( who has had ME years) led it a few weeks back and the topic was anxiety. I totally agree that it must be to do with the mechanism of the illness itself as it all builds on itself. I myself even find ibuprofen/nurofen helps more than just for pain in the context of this illness. I tried the sulphalazine, but it gave me a headache almost straightaway. It maybe that Al has been helped in the same way you were - just its anti inflammatory effect. How do you get on with NSAIDS? Did the sulphalazine help your pain or just your anxiety? - it seems to have done both with Al. What did doctors say when you said it helped with your anxiety? I just hope they find a reason for the relief for Al as he is not good left with uncertainty ( or in his own 'box' - I have warned him this maybe the case, but atleast we have "met " you now!

    Many thanks once again
     
  12. Jill

    Jill Senior Member

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    Thank you for this Snow athlete.

    He is having regular blood tests. We had read it was used in inflammatory bowel, which he hasn't been diagnosed with, but I suspect they could well go hunting for it if his joints look ok. His joints "look" ok on the outside, so we will have to wait and see. So far he has been thought to have IBS. It will be interesting to see what they do. I'm just glad we have his GP on our side, because if it wasn't for his persistence with the hospital and his not giving up on Al, that we are in fact being seen.

    Til Wed, Jill
     
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  13. snowathlete

    snowathlete

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    I know that in a minority of cases UC does cause joint problems. Forget the term for it but it does happen. Usually the lower back. But if UC or Crohns was the cause of his problems then he would probably know about it already with more definite bowel symptoms. Still, might be worth checking but there may be more likely things to check for. Good that you have a good GP. I've forgotten what one looks like.
     
  14. Hip

    Hip Senior Member

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    COX-2 inhibiting NSAIDS like celecoxib I found had good anti-inflammatory effects. Though celecoxib can have adverse effects in the stomach. Fortunately there are several supplements that have good COX-2 inhibiting abilities, including propolis 4000 mg and curcumin 1000 mg.

    I do not have any pain symptoms, just anxiety (plus several other mental symptoms), and anxiety is the only thing sulfasalazine helped me with. I did not mention this to my doctor, as I thought it was too obscure. However, these early successes that I had with treating my severe anxiety with anti-inflammatories did spur me on to try lots of other anti-inflammatory supplements, and this is how I developed my current anti-anxiety protocol detailed here. This protocol seems to work well for many people, so it is worth trying if you do have anxiety.
     
  15. Jill

    Jill Senior Member

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    Hi All,
    Another update:
    Al saw a rhemmie last week and this guy was the first guy to take him seriously- ever - except for his GP. He said it was surreal having a doctor ask pertinent questions, exam him - none have laid a finger on him prior! ( get him to bend forward whilst the dr held his lower spine and reach down sideways etc - all the things I'd expected if they were looking for Ankolysing ). Asked about psoriasis etc etc. He was really good and Al came out with tears of relief in his eyes. He was sent immediately for more blood tests ( one was CC something - its another test to pick up rhematoid when RF is negative ( apparently one in ten patients are negative to RF- who'd ever know???) and xrays. If the xrays don't show anything , he will be sent for a super duper xray at the main Auckland hospital. The guy had a sense of urgency about the situation. One of the moves actually made Al cry ( and he's no wimp). He said he would have expected more movement in the lower spine. So.... hopefully we will here something this week.

    Al himself , is finding the sulphalazine a bit hard going. He seems "down" , not like himself - but is still able to take a walk twice a day and puddle about slowly. I've just read on Wiki that the sulphalazine can cause depression - so maybe thats it. We just hope that one of the biologicals will be indicated - if that is the case - then we are in the system and its all fully funded ( a very diff scenario to having ME).

    More when we hear the results...
    cheers jill
     

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