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Thread: Hydroxychloroquine?

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    Default Hydroxychloroquine?

    Hi all

    Extremely long time and no posts from me.
    Those who do know me know I like to be difficult, or rather my disease likes to be difficult. I have the persistently grumbling sinus type of Wegs

    I have been on RTX for about 7 years now and long story short I had Truxima last June which I reacted too and then I've reacted to 2 subsequent infusions of MabThera. I'm on MTX for maintenance although historically it doesn't hold remission for me for long.
    I've tried Azathioprine and Mycophenolate and did not get on with these two... So as you can see I'm running out of drugs to try.
    Cyclophosamide has been discussed and this is to be a last option drug.

    So I've been struggling for a year now with my symptoms and feel like I am pre flare. My nose is very active but no signs of disease. A shed load of fatigue too but nothing showing in my bloods like high CRP or ESR.

    Prof Jayne would like me to be part of an Orencia trial but only when the RTX is out of my system so we are waiting for July now.
    In the mean time he has put me on Hydroxychloroquine as a maintenance alongside the MTX. Has anyone else been on Hydroxychloroquine and has it controlled your symptoms? The Prof said Guys in London did a successful trial with people like me who are persistently grumbling and it's really helped them control their symptoms. If you're one of those people please get in touch.

    Thank you
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Default Re: Hydroxychloroquine?

    I some times wonder about what is going on with Wegs in my body when I have some increased residual symptoms like nose bleeds, headaches, dental sensitivity, joint pain, eye pain, fatigue, etc but labs don't show much Weg activity and the maintenance drugs are still working enough so there is no new damage indicators to lungs or kidneys.

    These fluctuations in residual symptoms seem like mini flares to me and they often result in an increase in my maintenance meds of AZA and pred but my Doctors regard a serious flare as one that requires RTX so I guess these mini flares are still regarded as a normal part of a drug induced remission. But is there still damage happening? And if you feel like crap, is it still a good remission?
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hydroxychloroquine?

    Hi Sam,

    So sorry the rtx has stopped working well for you. What kind of reaction did you have ? Did you get the 100mg IV pred before in order to prevent reactions ?

    Tagging @Aneinu who's son also reacted to rtx and might be able to help. Also tagging @me2 who also stopped rtx after long use.

    As for hydroxychloroquine - it is also called Plaquenil. I was on it during 2012 for about 6 months. Sorry to tell, but it didn't work for me. But each one is different, it sure might work for you. It is used mostly in Lupus and rheumatic arthritis and my wg dr. thought it might work for me. Tagging @mishb - if I remember correctly she takes plaquenil.

    Also maybe in combination with mtx it can work better. At that time my wg dr. also tried bactrim which helped my wg back then.

    Notice that you need to check your eyes when you are on Plaquenil. I remember that I had to do a visual field test and an eye check before starting it to get the "baseline" to compare with after months of treatment.

    Drz, my wg dr. defines what you describe as wg activity on low level. We call it also smoldering. In my case it caused damage, my saddle nose.

    Hang in there Sam, praying you will feel better soon.
    Last edited by Alysia; 05-22-2019 at 01:50 AM. Reason: Adding info about the eye check
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Hydroxychloroquine?

    Quote Originally Posted by drz View Post
    I some times wonder about what is going on with Wegs in my body when I have some increased residual symptoms like nose bleeds, headaches, dental sensitivity, joint pain, eye pain, fatigue, etc but labs don't show much Weg activity and the maintenance drugs are still working enough so there is no new damage indicators to lungs or kidneys.

    These fluctuations in residual symptoms seem like mini flares to me and they often result in an increase in my maintenance meds of AZA and pred but my Doctors regard a serious flare as one that requires RTX so I guess these mini flares are still regarded as a normal part of a drug induced remission. But is there still damage happening? And if you feel like crap, is it still a good remission?
    Hi drz. I can't seem to get a straight question about my symptoms. They keep saying there is something else going on with me but obviously it's not showing in my bloods but symptoms are on the increase. The disease isn't well controlled and its getting very emotionally draining after a year being like this and feel no closer to feeling better
    Last edited by freakyschizogirl; 05-24-2019 at 02:50 AM.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Default Re: Hydroxychloroquine?

    Quote Originally Posted by Alysia View Post
    Hi Sam,

    So sorry the rtx has stopped working well for you. What kind of reaction did you have ? Did you get the 100mg IV pred before in order to prevent reactions ?

    Tagging @Aneinu who's son also reacted to rtx and might be able to help. Also tagging @me2 who also stopped rtx after long use.

    As for hydroxychloroquine - it is also called Plaquenil. I was on it during 2012 for about 6 months. Sorry to tell, but it didn't work for me. But each one is different, it sure might work for you. It is used mostly in Lupus and rheumatic arthritis and my wg dr. thought it might work for me. Tagging @mishb - if I remember correctly she takes plaquenil.

    Also maybe in combination with mtx it can work better. At that time my wg dr. also tried bactrim which helped my wg back then.

    Notice that you need to check your eyes when you are on Plaquenil. I remember that I had to do a visual field test and an eye check before starting it to get the "baseline" to compare with after months of treatment.

    Drz, my wg dr. defines what you describe as wg activity on low level. We call it also smoldering. In my case it caused damage, my saddle nose.

    Hang in there Sam, praying you will feel better soon.
    Hi Alysia.

    You've raised a lot of good points. I did have the premeds required to stop reactions but reacted anyway. I would love to hear from others who have reacted after long term use as RTX is still a relatively new drug for treating Wegs there isn't a lot of data out there about the long term effects of using it.

    My sister is also currently on this drug for her Lupus and she seems to be fairly stable on it.

    I was told eyes can be affected but didn't have an eye test prior to starting.

    Prof Jayne calls smouldering persistent grumbling which I like the sound of more lol.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Default Re: Hydroxychloroquine?

    Hi Sam,

    Yes, you certainly do have crazy times with your WG
    Hoping one day that something will continue to work for you.

    As for
    hydroxychloroquine (Plaquenil) I would be totally lost without it.
    Alysia is correct in all that she has mentioned about this medication. You do need to have your eyes checked each year, with a baseline field vision test done prior to taking it. The medication can cause issues with the retina/macular area of your eyes.
    In some people, the first few weeks of taking Plaquenil can cause stomach upsets and even make you vomit. If it's not too bad and you can stick it out, then after a couple of weeks it settles down. If you can't handle it, then there is no issue with stopping it straight away.
    Like MTX, it takes at least 6 weeks to kick in.

    After taking it for over a year, I felt that it wasn't doing anything for me. I was still getting joint pain, not like it used to be, but it was still there, so with my specialists consent, I stopped taking it. Within 3 weeks I felt like I had been hit by a bus. The pain was so bad, that I started taking it again, and have not missed another day for the past 7 years.

    Plaquenil also has many other advantages. Mosquito's wont like you, and hey if they still do, then at least you wont get malaria
    My Immunologist told me that Plaquenil taken in conjunction with MTX, can reduce your risk of heart disease.

    Any other questions, I'm only to glad to help

    Good luck and I hope it works well
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default Re: Hydroxychloroquine?

    Quote Originally Posted by mishb View Post
    Hi Sam,

    Yes, you certainly do have crazy times with your WG
    Hoping one day that something will continue to work for you.

    As for
    hydroxychloroquine (Plaquenil) I would be totally lost without it.
    Alysia is correct in all that she has mentioned about this medication. You do need to have your eyes checked each year, with a baseline field vision test done prior to taking it. The medication can cause issues with the retina/macular area of your eyes.
    In some people, the first few weeks of taking Plaquenil can cause stomach upsets and even make you vomit. If it's not too bad and you can stick it out, then after a couple of weeks it settles down. If you can't handle it, then there is no issue with stopping it straight away.
    Like MTX, it takes at least 6 weeks to kick in.

    After taking it for over a year, I felt that it wasn't doing anything for me. I was still getting joint pain, not like it used to be, but it was still there, so with my specialists consent, I stopped taking it. Within 3 weeks I felt like I had been hit by a bus. The pain was so bad, that I started taking it again, and have not missed another day for the past 7 years.

    Plaquenil also has many other advantages. Mosquito's wont like you, and hey if they still do, then at least you wont get malaria
    My Immunologist told me that Plaquenil taken in conjunction with MTX, can reduce your risk of heart disease.

    Any other questions, I'm only to glad to help

    Good luck and I hope it works well
    Hey mishb

    I never do anything the easy way. I have to be complicated. Thank for your feedback re plaquenil. I am hoping this works for me as well as whatever drugs I get to next. The MTX does nothing so if I could use Plaquenil as a maintenance medication that would be awesome
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Default Re: Hydroxychloroquine?

    Hi, I have had WG since 2010. Kidney and lung involvement in the beginning, now just mainly joints and sinuses and high CRP and Sed rate. I was almost in remission in early 2017 on Prednisone and imuran and so my rheumy told me if I wanted to have a baby, then was the time. So I got pregnant and had my son in February of 2018. Since then I have had the worst flare ever, second only to my first one in 2010. Tried the Imuran again, had horrible back pain and no effect on my numbers, so I had to stop it. My rheumy didn't want to do methotrexate or Rituxan or Cellcept again, as none worked for me in the past. He put me on high Prednisone to get my inflammation down, then Plaquenil to try to maintain. So far so good. It seems to be working. I still have joint pain, but it has kept my inflammation markers down, with no side effects, while tapering off the prednisone. From the time I had my son until now, no drug has been able to keep my CRP and Sed rate low (except for high Prednisone). But the Plaquenil seems to be doing a good job so far.

    Now I'm down to 5mg of prednisone and will have more blood draws in July to see how the Plaquenil is doing (almost) by itself.

    Good luck!!

    Sent from my SM-G955U using Tapatalk

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