Home Forums General Discussion Flare but Roadback Was There…And You Didn't Even Know It

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  • #458164
    whaleharbor
    Keymaster

    So…some of you like Maz, Cheryl F, Lynnie and Richie may remember me from what seems like a lifetime ago when I first found you in 2008 and was able to get on AP. I dropped away from the board for many years even though I’d check in from time to time, mostly because I needed to feel like a “normal person.” Once I felt better I just didn’t want to deal with this all any more. It was selfish of me really, because I should have been here supporting those just starting their journey as so many of you generously supported mine.

    So here’s the rest of my story. Through Minocycline I was able to get off everything except a maintenance dose of Celebrex. I’ve been taking 100mg minocycline every other day (teva) and then later (watson/actavis). My local rheumy was amazed and actually ended offering AP to other patients because of me and some other unknown patient that also has done well.

    Fast forward to a few weeks ago when my Walgreen’s gave me a new generic of minocycline from Ranbaxy…long story short, I went downhill very fast. I’ve been years in remission only to get really sick, really fast. Then I came back and checked here and realized …”wow it could be the change in the generic brand.” After one (1) …yes only ONE of the actavis minocyclines (I made my doctor specify it) I now feel so much better. I literally took that one first pill back on the actavis brand last night. Yes, I can feel the difference already.

    I’m not telling you all this to suggest that Ranbaxy is “bad” and Actavis is “good” as what I’ve read on the board different generics work for different people. Rather I’m telling you this to (1) thank you AGAIN for saving my life (literally) and (2) if something ain’t working…switch generics or switch to brand or switch…don’t give up.

    I’m hopeful that in the coming weeks I’ll get right back on track as the difference has been so very dramatic with one dose back on the actavis wagon.

    Anyhow, I also promised God that I wouldn’t be selfish any longer. I’m here to support all of you…to support this cause …to give back because you all have been so generous to me.

    100 mg Minocycline every other day (Actavis Brand)

    #458165
    Maz
    Keymaster

    Whaleharbor, it’s great to see your smiling face, though not so great to hear that the generic mino switch had you in a bind after doing so well for so long. It will be great to have you back to share your experiences and here’s to a swift turnaround now that you’ve identified the issue!

    It’s been often said around here, “Why switch what is working?” Seems your experience is a good example of this.

    #458218
    bonnielou
    Keymaster

    So glad you have had so many years of good results, and hopefully you will be back on track quickly again. I have been through a number of different generics and have turned to sourcing from Canada as I seem to have better luck with the options offered through their online pharmacies.

    Hope to see you often on the boards again.

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #458223
    whaleharbor
    Keymaster

    Hi Bonnielou! Thank you for your kind words. I just want to serve and support where I can here. I’m just a patient, I know nothing…but perhaps give some hope etc…

    I will document my second trip on the “road back” once I get to the other side. But for anyone reading and wondering as of right now, I seem to be going through a similar cycle of herxing and then getting better as I did when I first started taking mino…just less severe and progressing quicker…which is good. I am grateful for the actavis brand!

    Anyway, funny you should mention about Canada…I was talking to my health insurance agent who was telling me that she gets her meds from Canada via an online pharmacy. I’ve always hesitated because how can we be certain we are getting what we think we are getting with some online pharmacy…but I haven’t ruled that out if it comes to that.

    I’ve also written an email to President Trump and my congressman about the whole drug generics not being equivalent, cost of medicines issue…not sure if either of them (or anyone on their staff) read it, but it made me feel better to put in my 2 cents worth. Only those of us dealing with something chronic like a rheumatic disease can fully appreciate the desperation of trying to get what you need because if you don’t you’ll get really sick real fast. Sigh…

    I appreciate the warm welcome.

    xoxo

    100 mg Minocycline every other day (Actavis Brand)

    #458444
    whaleharbor
    Keymaster

    So thought I’d update you all. As you know I’ve been dealing with a flare/relapse/herx …not really sure….. which I believe began after they switched my generic brand. But I’m close to menopause (not there yet but coming up on that age) and I’ve been dealing with lots of stress and have had thyroid issues in the past so any or all of the above could be leading to this.

    Today I went to my rheumy who though not an AP doc per se, now believes in ap (thanks in part to me forcing him to look at it). For those reading this please know that I spent a good 8ish to 9ish years is blissful remission…so don’t get discouraged. But now I have this bump in the road. I’m documenting this for all of us…as probably more than me will encounter some odd bump in the road and it may prove useful info for someone else to share with their doc should they find themselves in a similar predicament. Just know this, I know that I know that I know that ap works for me. Make no mistake, I know the road back, I’ve been down that bumpy trail before, the hike is a challenge but the way is clear. I will find my oasis again very soon.

    So here’s what he did today (1) he gave me a prednisone shot (2) took lots of blood samples and (3)increased my mino dosage to 100mg every day. He said he might increase it more depending on the blood work etc…and how I do on this new 100mg every day.

    He agreed that the generic change could have caused this or the stress or both.

    Now we wait…I’ll keep ya’ll posted.

    100 mg Minocycline every other day (Actavis Brand)

    #458445
    Maz
    Keymaster

    What an empowered and positive update, Whaleharbor – thank you for sharing this. You’re an inspiration, not only because you reached remission before and know the treatment works, but also that you’re such a strong self-advocate, willing to look for why you have experienced this relapse after 8-9 years of remission. Add to this that you’ve been able to work with a rheumatologist who wasn’t an AP advocate and that you proved it could work so well, is such a powerful thing to face and do in the early days, especially when feeling so unwell. It’s fantastic that you have a compassionate doc who knows your history and is willing and able to help you out of this blip on your road. The makes the road ahead so much easier to navigate….and you will!

    #458640
    Rose
    Participant

    Thank you whaleharbor for these posts. I was doing very well with MWF dosage of 100mg Minocycline. Then my Pharmacy switched me from Watson brand to Teva and I started having a flair up. However, I have also been the caregiver to a mostly bedridden husband for two years and the stress might be getting to me. Anyway I am back on the Watson with another pharmacy and so hope things might get better.

    Several years ago when I first started on AP therapy It was the brand name Minocin which is of course impossible to get now, I even got it through Canada for a couple of years when it was hard to get it here. That mostly put me in remission for three years and how I have my flair up, so we will see how things go. Rose

    #458643
    whaleharbor
    Keymaster

    Rose, I am so sorry that you are going through a flare right now. I get it…I feel for you….I’m right there with ya. Perhaps the takeaway for all of us is that any change in formulation ***may*** cause a flare.

    I went into remission with the TEVA (pink and maroon) pills. The pharmacy switched me to Watson/Actavis (now owned by Teva -yellow and gray pills with DAN on them) when TEVA no longer produced the pink/maroon pills. Looking back, I think I did flare a little but it quickly resolved. It was only when they switched me to the Ranbaxy pills during a time of an extreme emotional life stress that the RA came back quickly. My doc thinks it was the combination of pills that may not suit me or be as effective for whatever reason, coupled with the severe stressful situation that allowed the RA to breakthrough.

    Where I am right now…I have removed as much stress as possible from my life (easier said than done)…but am also working on trying to handle stress in general better and take better care of myself. My doc got the pharmacy to get me the Watson/Actavis (now actually owned by TEVA) brand with the DAN on it…and he increased my dosage to 100mg every day (used to be every other).

    What happened…I went through a similar assimilation process as I did when I first went on Mino…the lack of sleep and dizziness that I experienced when I first went on Mino happened again (now gone)…the rounds of herxing with waxing and waning symptoms are going on right now – just as if I had started Mino for the first time – just not quite as bad because I wasn’t as bad off this time.

    Overall, I’m feeling much better but I had forgotten how challenging (emotionally and physically) the herxing and see-sawing of symptoms can be. I’ve done a lot of crying….hours and hours of crying. Today is a pretty good day and I know I’m going in the right direction…but the disease is still “active.” The RA was definitely inactive for years (no morning stiffness, no pain, blood work great etc…).

    I can’t believe I’m back here again, but I’m grateful to know my way back to where I was. I’m grateful to all of you and the RBF. I’m grateful for every moment of relief from the suffering…and I can’t help but wonder if there isn’t a greater reason for all of this. I hope it’s not for nothing – in other words. I hope that by going through this (again) and documenting it for everyone that someone else would benefit from it also.

    In your case, I think that being the primary caregiver for someone that you dearly love that is bedridden is beyond severe stress. That is one of life’s biggest stressors. I think that explains a whole lot. My advice…take help wherever you can because you have to stay strong for yourself and your husband. I’m glad you are able to find the Watson brand again and I am hopeful for you that it will quickly get you back to where you need to be. I wish you perfect health. Please keep us all posted, Rose.

    100 mg Minocycline every other day (Actavis Brand)

    #458683
    Rose
    Participant

    Whaleharbor, Thank you so much for your answer. It helps a lot. I am worried that I will not be able to get the Watson the next time I need my refill because there seems to be a problem getting it. Am seeing my Rheumatologist today will see what the blood tests say. This Roadback website put me into remission several years ago and I am so grateful to them. My Rheumatologist did not believe in it but went along with it and now he sees that it did work for me.

    #458684
    whaleharbor
    Keymaster

    Right there with you, Rose. I can tell you this. Last month my pharmacy…(a big national retailer in the USA) was able to get it and they are able to get it this month also…both times via special order. So you should be ok, I think.

    100 mg Minocycline every other day (Actavis Brand)

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