Home Forums General Discussion Fluid Retention

This topic contains 24 replies, has 4 voices, and was last updated by  enzed 3 years, 2 months ago.

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  • #308476
    enzed
    Participant

    I have experienced fluid retention issues throughout my AP journey. On searching the forum I found a post from Maz, indicating fluid retention can be a hypersensitive response to AP or possibly other medications or perhaps a medication combination.In my case I’m certain it’s the AP causing it.

    I’ve stopped AP indefinitely from today at least until this latest round of fluid build up which has started again in my ankles, has reversed. My experience with AP over the past 2 years has shown fluid retention to be a recurring issue for me. It begins with fluid build up pooling in both ankles and then in both knees. It only goes away after a long ‘washout’ from AP and a lot of detoxing.

    Given that I began the AP journey on Mino and had a hypersensitive reaction to it and then switched to Doxy as a result, it seems likely that I have now developed a sensitivity to Doxy as well.

    If anyone has any information about fluid retention and its relationship to AP please post.

    Scleroderma, Raynauds, Osteoarthritis. Began AP on 3 October 2012, Minocycline for 6 months. Stopped Minocycline on 14 April 2013 because of complications. Starting AP again on Doxycycline June 2013. Personal thread ‘Another Scleroderma Raynauds Story starting AP today’.

    #373312
    Anonymous
    Participant

    Enzed,
    “Fluid build up” – does it feel like swelling? Have you checked the fluids going in and out?
    Linda L.

    #373311
    enzed
    Participant

    @linda L wrote:

    Enzed,
    “Fluid build up” – does it feel like swelling? Have you checked the fluids going in and out?
    Linda L.

    Hi Linda, the fluid retention I get is not related to fluids going in and out. I did take a diuretic for fluid retention at one stage but that created dehydration and caused muscle spasms. I never experienced fluid retention before AP.

    First my feet feel stiff and sore then the liquid appears in the ankles. I can wobble it with my finger. It’s an actual pool of liquid. If I don’t stop the AP at that point, the knees follow in the same way. They get very swollen then the bags of liquid appear as well. It takes ages to get my knees back to normal and it takes a long washout to achieve that.

    This time it was only my ankles involved before I stopped taking the Doxy.

    After a washout, I had previously reduced the Doxy dose from 200mg a day to 100mg every second day in the hope that would avoid a recurrence of fluid build up but to no avail.

    I may have developed a sensitivity to Doxy as I previously did to Mino.

    Fortunately, over the past 2 years I have had great success with AP in terms of controlling and reducing the SD symptoms. All my blood tests are now normal but the cause of this recurring fluid retention problem is a mystery.

    #373309
    Anonymous
    Participant

    Do you take any other medications?
    Linda L.

    #373310
    enzed
    Participant

    Updated my signature, added all medications.

    #373313
    Anonymous
    Participant

    Enzed,
    I have not heard about such side effects after taking ABX as most of us do. We know that everyone is different, but I have checked the side effects of one of your medications Quinapril: swelling of hands, ankles, feet, lower legs, hoarseness etc.
    Maybe you should check if maybe other medication cause the symptoms you have. I know that there is a simple test to check if you really experience fluid retention – drinking and checking your urine. Ask your doctor and check it first.
    Also ask the pharmacist or your doctor to check the interaction of all your medications.
    Linda L.

    #373316
    richie
    Participant

    Hi I can remember when I took my first ACE inhibitor —it caused fluid retention –in fact my doctor had to change meds two times —perhaps you can discuss with your doctor about the quinapril you are taking —
    richie

    #373315
    enzed
    Participant

    @richie wrote:

    Hi I can remember when I took my first ACE inhibitor —it caused fluid retention –in fact my doctor had to change meds two times —perhaps you can discuss with your doctor about the quinapril you are taking —
    richie

    Richie, the thing is, when I stop the Doxy I still continue to take the Quinapril and the fluid build up stops and then disappears. This happens every time. Before AP I never previously had fluid retention even though I was taking Quinapril then.

    Do you mean that the combination of Doxy and Quinapril could be causing the fluid? If that is what you mean do you have any info about an alternative ACE inhibitor that would not have that effect when combined with Doxy? If you have a brand name I could research it before suggesting it to my Dr. His knowledge of AP is restricted to information I have provided him with. I am his only patient with SD.

    I had low blood pressure all my life until I became ill in 2009 and was subsequently diagnosed with CREST. At that time my BP suddenly escalated. It’s very strange.

    My annual lung and heart checks were normal as are all my recent blood tests including ANA. I stay away from supplements because they can also cause problems especially when combined with prescription drugs.

    I will stop taking the Isosorbide Mononitrate from today because my fingers are really good now and I haven’t had a Raynaud ulcer for 2 years. The rheumy did say I can stop taking it when my fingers improve and start agin if they begin to deteriorate. So that drug can be deleted. I have no idea if its the culprit but I guess its possible.

    Thanks for your suggestions.

    #373314
    Anonymous
    Participant

    Enzed,
    At the time you were diagnosed with CREST, did they give you high dose steroids eg. Prednisone? I know for sure that after a high dose of Prednisone you can start having high blood pressure for ever.
    Mononitrate is B1 vitamin.
    Linda L.

    #373317
    Anonymous
    Participant

    One day in summer I ate many slices of sweet watermelon. Shortly after that my right leg became very hard and swollen. Is it a sign of fluid retention?
    Linda L.

    #373318
    richie
    Participant

    Hi Fluid retention is usually puffy and if you press the area with your finger -it leaves an indent
    richie

    #373319
    enzed
    Participant

    @linda L wrote:

    Enzed,
    At the time you were diagnosed with CREST, did they give you high dose steroids eg. Prednisone? I know for sure that after a high dose of Prednisone you can start having high blood pressure for ever.
    Mononitrate is B1 vitamin.
    Linda L.

    I have never taken any of those rheumy prescribed drugs at all. I refused all drug treatment on offer until I found this forum 2 years ago and began AP after approaching my family doctor and asking for a Mino script. After what I have found out about Prednisone and the other immune drugs I am so glad I refused them. At the time they were offered I thought they sounded dangerous and told the rheumy that. It didn’t make me popular. But I just kept searching the internet for a safer and better alternative. My high blood pressure just came out of nowhere and coincided with my suddenly becoming seriously ill in 2009. Raynauds was the first obvious sign something nasty was going on and I discovered then that my blood pressure was very high for the first time in my life.

    It has nothing to do with salt either – in fact I get tested for low sodium levels and need to remember to add salt to my food to maintain a safe level. It’s very strange. I expect its another symptom of SD. Perhaps the tissues can’t maintain salt correctly or something.

    #373320
    enzed
    Participant

    @richie wrote:

    Hi Fluid retention is usually puffy and if you press the area with your finger -it leaves an indent
    richie

    Yes Richie the skin dents when I press the area. During the 2 years I have been on AP my regular Dr has supervised me throughout. He has confirmed fluid retention each time the ankles and/or knees swelled up and wasn’t sure as to the cause. He did prescribe diuretics but warned me about taking them for more than a few days at a time. He accepted there is link to AP but was willing to continue the Doxy on the basis the SD symptoms were improving all the time as evidenced by blood tests and a simultaneous improvement in my general health. I think the rheumy expected me to be in dire medical trouble by now but in fact the SD seems to be under control.

    I will follow up with my Dr regarding your suggestion that the BP medication could be changed. He has respect for the expert opinion of DR S in Iowa and for the information I have found on this forum and printed out for him. He had never heard of AP treatment for SD or RA before I asked for it but refused to prescribe it for another SD patient when I raised that with him.

    His answer was, he can justify antibiotic treatment for me because I was already his patient, there is no other treatment available for SD and also because I threatened to buy antibiotics from India if he didn’t prescribe for me and that I asked him to supervise my treatment if possible. I invited him to describe me as a reckless patient who would otherwise put herself at risk if he was questioned over prescribing me long term AP treatment. He found it hard to refuse me AP on that basis but was against the idea of accepting new patients specifically seeking AP. This AP journey has been a learning curve for us both.

    #373321
    PhilC
    Participant

    Hi Linda,
    @linda L wrote:

    Mononitrate is B1 vitamin.

    You’re thinking of thiamin mononitrate. Isosorbide mononitrate is not the same thing.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #373322
    Anonymous
    Participant

    Phil,
    You are right. Thank you.
    Linda L.

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