I did a really dumb thing!

[Jeni]

Hi all,
I don't know what I was thinking, or not thinking, but I doubled my mino dosage! Needless to say, I think that I am having a really bad herx or flare, I'm not sure because I stopped my Enbrel cold turkey, too. I had been taking my Enbrel one time every two weeks instead of the four times in two weeks, which is normal. I guess I panicked because I was diagnosed with skin cancer and it reminded me of how my mom died. She had a skin cancer that they had to do a graft to cover, and when they took the graft they contaminated the site. She died from the tumor that spread from the graft site. Anyway, I guess I just freaked out because all of these immuno-suppressant type drugs seem to cause cancer. I decided that I should just stop the Enbrel! Well, now I am getting really sore. I can't decide if I should reduce the mino, or just keep going with the 100mg 2x on M,W, and F. I am tempted to take some Enbrel, but I can't decide if I should just tough it out and suffer, and hope that the mino takes over. It was really scary this morning when I couldn't bend one of my fingers. That hasn't happened in years! I also started taking fish oil and msm hoping to reduce some of my inflammation, but I think that I started kind of late! Any words of wisdom would be appreciated here!

I finally made my appointment with Dr. M here in Washington, that Maz gave me the referral for. The funny thing is that he's my boyfriend's back doctor. He specializes in functional medicine and his approach looks wonderful. His website says that he also specializes in autoimmune disorders.  I am very excited to see him. I have some other issues that I think are related to my RA , like food allergies, and stomach problems, and I really hope that he can give me some insight. I am just so tired of dealing with my rheumatologist that I finally decided to take this jump. The reason that I am calling it a jump is because I haven't the faintest idea how much my insurance will cover. I checked my plan, but it's vague. I am hoping for the best. It's so annoying that insurance only likes “traditional” approaches to medicine!

Any opinions on what I should do until my appointment in two weeks? I have been herxing/flaring for about a week now. I seem to be slowly getting worse.

Thanks,

Jeni

[Velouria138]

[Maz]

[user=1749]Jeni[/user] wrote:

I don't know what I was thinking, or not thinking, but I doubled my mino dosage! Needless to say, I think that I am having a really bad herx or flare, I'm not sure because I stopped my Enbrel cold turkey, too.

Any opinions on what I should do until my appointment in two weeks? I have been herxing/flaring for about a week now. I seem to be slowly getting worse.

Hi Jeni,

Sorry to hear you made this boo-boo, but try to hang in there. Doubling one dose isn't going to do much damage, if any. In fact, one person who used to post here would take their 200mg doxy all at once in one dose every day. It's not a biggy, but you're right that this in combo with stopping your Enbrel cold-turkey may have precipitated a herx and some big rebound.

Can't really tell you what you should do about your Enbrel, as that must be your decision. One way to look at it is that at some point you are going to herx as you wean from Enbrel anyway. It would be more gradual herxing, but it will happen as the immune system gradually gets turned on again. The other way to look at it is that you've done pretty well spacing out your Enbrel shots to one shot every two weeks, so if you start to feel too much rebound and herxing, it isn't going to be a biggy if you needed to take another Enbrel shot. You could then really focus on spacing out the doses even further as time goes on and your mino starts to do the job. Either way, the goal with AP is to get off the other drugs, whether cold turkey (which is very hard) or in gradual increments. With your level of motivation, I have faith you'll do it very successfully, but it's whether you want to suffer thru the big rebound, or not, that is inevitable and, if you can manage to function in your job or other daily responsibilities. Herxing is a good thing…just not too much herxing…”kill the bugs, but not the patient.” 😉 

Velouria brings up a really good point, too. Very worth getting tested thru IGeneX for Lyme, just to figure out if it may be a component in your disease at this juncture, as it could well affect treatment course and which doc you should be ultimately seeing. I can't remember off-hand if we talked about that before when discussing docs, as you may have just asked for the AP doc list?

So sorry to hear about your run-in with skin cancer. My hubby has had to deal with it, too, as he had radiation treatments to the side of his face after a bout with parotid gland cancer and it makes him prone now to skin cancer in that area.:doh: No doubt you were onto this nice and early, so you're okay…but so saddened to hear of your poor Mom and what she went through. I lost my Mum just when I got sick with RA, so I empathize…doesn't matter what age we are when they go, we always miss our beloved Moms.

Peace, Maz

[Jeni]

Hi Velouria,

Actually motrin really works well for me, but I have to be careful of my stomach. If I take it too much it just kills me and then I can't take the mino either. Actually, I found something that I bought two years ago that I took last night when I was in so much pain and panicking. Have you ever heard of Wobenzym? I can't even remember what I was thinking when I bought it, but it worked amazingly well and it didn't hurt my stomach. I was really interested if anyone else has used it? I got up this morning and I felt a whole lot better than last night. I took three more wobenzym this morning and I have felt so much better the entire day so far. I don't think it's a placebo effect. It says that it's safe to take before surgery because it doesn't increase bleeding. I hope this is true because I am down to mino, fish oil, msm, and now the wobenzym if it keeps working. I am supposed to stop the fish oil two weeks before my surgery which is terrifying me. I just don't think that I can handle all that pain again, but I really don't want to go back on the Enbrel.

I think that maybe something suddenly started working- the wobenzym or the mino? I am just praying… but so thankful that the stiffness and pain were much less today, because I was getting really scared here!

I am pretty sure that I got tested for lyme years ago and it was negative. I am going to a new doctor in two weeks and maybe he'll want to retest me. The other thing is that my joint damage is really symmetrical so I just assumed that it couldn't be lyme. I will definitely ask him though, thanks! I will add that to the list of questions I have for him. Just a thought here, my neck is killing me and Maz said that seems to go with Lyme?

Thanks for your kind thoughts about my mom. I honestly hate when people whine but I have had the worst last couple of years….my dad died, two years later my mom died, my husband went crazy (bipolar) and I just spent the last three years trying to get divorced and protect my two sons, my oldest ran away, my youngest wanted to kill himself… the list goes on… Somehow I have managed not to go crazy! I guess when tested we all find inner strength we never knew we had. I know that I must have some amazing angels looking over me! I am so thankful though and feel blessed that I made it through. Hope I'm not whining…

Thanks for your ideas. I will let everyone know what Dr. M says. He really looks amazing and I am hoping that he can sort through my list of health issues. I have always felt that I could just figure this out if I tried hard enough!

thanks again,

jeni

[Maz]

[user=1749]Jeni[/user] wrote:

I am pretty sure that I got tested for lyme years ago and it was negative. I am going to a new doctor in two weeks and maybe he'll want to retest me. The other thing is that my joint damage is really symmetrical so I just assumed that it couldn't be lyme. I will definitely ask him though, thanks! I will add that to the list of questions I have for him. Just a thought here, my neck is killing me and Maz said that seems to go with Lyme?

Jeni, with that neck pain, unless it's injury-related, would definitely get tested for Lyme. You can call IGeneX to have them mail you a testing kit and get Dr. M to sign off on the Western Blot (test #s 188 and 189) while at your appt in 2 weeks. Very worth doing.

I have RA/Lyme with symetrical, bilateral joint involvement….every joint affected in the beginning, but just one dickie knee and ankle now. Lyme can trigger all kinds of autoimmune issues and can mimic them, too (as in seronegative AI diseases). Standard tests are pretty bad, missing 50% of cases, but IGeneX is more sensitive and includes important bands that were removed from standard tests a while back. Won't go into the boring details, but IGeneX testing is far superior to standard tests and worth the $200 investment to get on the right treatment track from the get-go.

Hope that helps?

Peace, Maz

PS…Jeni, believe me…you deserve to have a good vent after all you've been through. I can't believe you're so grounded and the experiences you've been through would bring the best of us down. Jeni, you rock, girl! :dude:

[Jeni]

Hi Maz,

Thanks for the encouragement! I will definitely talk to Dr. M about the Lyme and specifically IGeneX. I have had dogs for years and have always slept with them, so who knows. I have seen one or two ticks on them over the course of twenty years, so who knows? Mostly, my dogs have been tiny house dogs, but I do remember seeing a tick or two. The other thing is that I remember that I was negative for the rheumatoid factor when I was first diagnosed with RA. And also, my sister has the theory that our mother got RA (or lyme?) from a blood transfusion and gave it to me when she was pregnant with me. There is no history of RA in our family other than my mom and myself. Who knows. I just finally felt too overwhelmed to deal with it myself so I decided to try Dr. M. I am crossing my fingers!

Another (embarrassing) issue is that my wonderful ex-husband gave me HPV that I haven't been able to clear from my body, and now I have cervical changes. They are minor, but the OBGYN wanted to do surgery for that too! I actually am going to go to another doctor because she seems kind of untrustworthy. I researched Enbrel and HPV and I think that they believe that Enbrel inhibits the body's ability to clear the virus. Yet another reason for me to get off these darn immuno-suppressive drugs!

I know that my immune system is totally whacked out because I have now also developed oral allergy syndrome. Last summer I started getting throat and mouth itching when eating cherries. Unfortunately, it has now spread to apples, pears, plums, and peaches. I am so mad because I love fruit! I just wish I knew what is causing my immune system to go so haywire? Does lyme do that? Maybe it will turn out to be a helpful clue!

For now, I think that I will tough it out and stay on my current dosage of mino, and see what happens. It's funny, but just as I couldn't take anymore, I started to feel a bit better! I am hoping that the mino is actually working for me! I guess I can always take one shot of Enbrel if I get too desperate!

Sorry to hear about your husband's skin cancer issues. I hope his go away! I think that I caught mine early enough that it should be fine. I think that I have just been overwhelmed and it was one more thing!

Sounds like you and I both lost our moms at terrible times in our lives. You're right, it's so hard to lose your mom! I like to think that my mom is with me in spirit at least. She was such a strong person. She kept working, as an acute psych nurse, until she was 65 years old! She loved work and refused to feel sorry for herself about her arthritis. Up until she died she was still worrying about other people. I miss her so much, but know that she is responsible for teaching me to be the strong person that I am, and I'm grateful!

Thanks Maz, and everyone for your support!

Jeni

[Eva Holloway]

Jeni,

if you going to have surgery you have to stop the Enbrel anyway, so don't go back to it. Didn't your doctor tell you that you need to stop Enbrel? If not, then that was not wise of him/her.  Also it may be good you taking the antibiotic before the surgery.

Best wishes for the surgery and hopefully everything will be fine.

Eva:D

Eva Holloway

[mschmidt]

Jeni,

So sorry to hear you had a flare, and aren't feeling the greatest.  I don't think that doubling up a dose will hurt you, just may have caused some herxing.  The fact that you also stopped Enbrel cold turkey makes me think that you are having a flare from that as well.   I also want to extend my deepest sympathy to you regarding the loss of your mom.  I can't even imagine having to go through that, and I understand why you panicked the way you did. 

I'm glad that you have an appt set up with Dr. M–sounds like he is knowledgeable about various causes of illness.  Like the others, I encourage you to get tested for Lyme Disease by Igenex.  So many of us have that in the mix as well, and it's better to know if you have it earlier than later. 

As far as HPV is concerned, it is SO common among women that it's ridiculous, and there are different strains of the virus.  If caught early, there are many things that can be done to treat it effectively.  The biggest thing is to make sure to get your annual pap on time, as that's the only way to pick up changes in the progression.  I remember being in college in the early 90's, and nurses were handing out pamphlets about it because it was so prevelent on campuses across the U.S.  I think once the Enbrel is out of your system, you have a better chance of your immune system being able to fight off various infections and viruses. 

I hope you continue to feel better each day.  Please keep us posted on how you're doing.

Maria

[Jeni]

Hi Eva,

No, actually the doctor didn't say to stop the Enbrel before surgery. They actually consider it to be a class “b” drug like Tylenol, if you can believe that! I have totally gone off of it so I think that I will heal better. I will also be taking doxycycline before the surgery and after it too. I think all in all, about a week of the doxy. I hope I don't get another yeast infection!

Thanks for your kind wishes!

Jeni

[Jeni]

Hi Maria,

I actually increased my total mino dosage. So, for the last 2 months I have been taking 100 mg on M,W, and F, but, now I am taking 200 mg on M,W, and F, and have been for the last two weeks. I just don't want to stop because I think that sooner or later I would have had to face going off the Enbrel and increasing my mino anyway. I just hope that suddenly doubling the mino wasn't too bad, but I couldn't stand waiting to find out if it was going to really work for me. I gave my body almost five months of increasing the dose gradually until this last big “leap”!

I hope you're right about the HPV. I've already had two colposcopies and now they want to do a LEEP on me. To me it's pointless, because if I still have the virus, why bother as long as the cervical changes aren't too alarming. I've been having paps every 4 months for the last one and a half years…. and things actually look visually better! I just need to find a better OBGYN! I really think it's the Enbrel that caused this issue, and now that I am off it, I hope that my immune system goes after “IT” instead of me!

I will definitely talk to the doctor about the IgeneX test. All of you keep stressing this, so I know that it must be really important and I won't ignore it. I'm writing it down on my list for Doctor M.

Thanks for your support! I really appreciate how kind and helpful all of you have been!

Jeni

[lynnie_sydney]

Jeni – by all means get a 2nd oinion, but it is better to have the cells excised if they are pre-cancerous. The LEEP procedure is both diagnostic and a treatment.

<span style="font-size:2]Cervical dysplasia is a term used to describe abnormal cells that are at high risk of becoming cancerous, but are not cancer yet. Whatever the results of microscopic evaluation, the problem is often cured by the L.E.E.P. Therefore, L.E.E.P. is both a biopsy and a removal of the abnormal tissue (a cure if you will) all at once.

[/size]
[align=left]BTW, there are actually 30 different strains of HPV and only 3 of these are potentially dangerous. 99% of women carry this virus and most have it without it ever being a problem. Viruses can be 'activated' by any event in which the immune system is suddenly compromised. Lynnie[/align]

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Jeni]

Hi Lynnie,

Thanks for the info. I think that part of the reason that I have been having a hard time deciding what to do is that my current obgyn is terrible! I always leave knowing nothing!I have to figure out everything on my own! And the nurses have treated me like I was a complete moron and have been insulting to boot! One comment, “have you gotten any other std's lately?” I was so insulted! The other nurse just assumes that I want them to do all kinds of stuff to me without even asking, and then she treats me like I am a complete imbecile! I finally answered her with ” I would never do something like that because I'm a microbiologist!” Of course, never mind that I graduated in micro twenty years ago! Anyway, so I have to find a new doctor. I always feel like I am some sort of complete prostitute or something when I leave their office. I have explained to them that my ex cheated on me and that's where the HPV came from!

My changes are cin1 and are not even considered “pre-cancerous”, so from everything I've read, it's ok to wait on this. She even commented that she thought that my last colposcopy biopsy might even come back normal! So, I think that I have found a new doctor here that actually specializes in abnormal paps and I will go and see her. I have been currently waiting for four months to pass to repeat my pap again. After I asked for my colposcopy reports the doctor backed off on her recommendation to do a LEEP and said that it was FINE to wait four more months. Sorry for venting, but I hate doctors that treat you like you're stupid! The two dermatologists I just saw were terrific! They gave me info and explained what my choices would be based on the biopsy results and I felt totally informed and confident in their skills, and my choice. I actually had to ask the obgyn nurses for my labs. No one ever explained a thing to me. It has just taken me a long time to make the decision to leave because I have had so much else going on in my life with my divorce and all the other “stuff”.

Thank you again for your info, because I have been feeling, and have been treated like a leper from my obgyn's staff! I didn't know that 99% of women carry the virus and that stress can activate it! I have been going around so ashamed, and I haven't done anything! And sorry for venting……:)

Jeni

[Steve201]

no problems…I do dumb things all the time…

 

during the cold war, my chief engineer came to me after a particularly large chewing of my butt by the admiral, and told me not to let things bother me so much…sometimes the bear bites you..sometimes you bite the bear….just need to get more bites on the bear then he gets on you..:headbang:…always remembered that saying for some reason..and it is usually true…

life's short..enjoy the ride…:roll-laugh:

Steve

[lynnie_sydney]

[user=1749]Jeni[/user] wrote:

Thank you again for your info, because I have been feeling, and have been treated like a leper from my obgyn's staff! I didn't know that 99% of women carry the virus and that stress can activate it! I have been going around so ashamed, and I haven't done anything! And sorry for venting……:)

Jeni

 Jeni – sounds like you absolutely do need to get a new doctor! It's never okay that we are made to feel stupid or ashamed by health care providers, so vent away – and then walk away! BTW, the reason I know this info is that it was given to me by a fabulous gyne-oncologist (they are out there!). I think the 1% of women who dont carry the virus are those who've never had sex. Hope you feel better soon, Jeni. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Jeni]

Thanks Lynnie!

Jeni

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