It's been a while…update on my sucess and steps back on AP

[amyid]

Hey all, it has been quite a while since I have posted.  It is nice to see many familiar posters as well as many more!

A brief (I'll try to be anyway…for those of you who remember me, you know that is probably not going to happen:blush:) update: 

 In July of '08 I saw DR. S for a round of Clindy IV's to treat my RA.  I had been on Minocin since late April after being diagnosed in March of '08.  I was also taking plaquenil and mtx.  My visit in Iowa went well.  I did have some herxing for a week or two afterwards.  I felt great for a few weeks and then started to flare again.  Probably due to stress as my father was diagnosed with cancer.  Called Dr. S  & he recommended monthly booster IV's.  A friend/RN said she would administer for me so I had one in late Aug.  Then we found out state law required a MN DR give the Rx for her to give the IV.  So I only had one booster.  However, it did the trick as I didn't flare up again…even though I was dealing with another medical problem. 

Around the time of that Aug booster, my neck started to feel very swollen, especially on the right side.  I felt like I had the mumps…didn't look it, but felt that way.  Visited GP's office 2 x…said it was nothing and that the RA can cause lymph nodes to enlarge.  I was having some pressure when swallowing and was getting a bit distressed.  By late September I was getting concerned as a significant lump was now very palpable in my neck along with other slightly enlarged nodes.  Went to an Urgent care and was put on Augmentin and recommended stopping the MTX until suspected infection cleared.  Wasn't noticing any change after a week, so I called my ENT who saw me through many sinus issues…knew he would at least listen and take me seriously.  Saw him in early October and was given 2 weeks of Biaxin (Clarithromycin), still no change.  Sent for a CT and had a scope look at the back of my throat…and was scheduled for surgery to remove suspicious lymph nodes from the back of my tongue and neck 4 days later!!!  I was terrified I had lymphoma and was concerned for my father as his surgery to remove his cancer was the next day….(no stress)

Turns out, I didn't have a swollen lymph node in my neck, rather a growth protruding up from my thyroid like a finger.  The growth was benign, thank goodness as were all 4 lymph nodes from my tongue/throat.  Also, my thyroid function remained normal.  Miraculously, I didn't flare at all during this process…and I was only taking the Biaxin and then went back to my Minocin 100 mg MWF.  (Note: I do know that Biaxin can provide relief of RA type symptoms to people with H. Pylori infections…I was tested for HP and was neg).  So from Sept. until around Thanksgiving I was flare free and I had been completely off MTX for 3 months!  :DSomedays, I think I ALMOST forgot I had RA.  

However, I have taken a step back as it has reared it's ugly head again and has proceeded to kick my a** for the last month.  I have refused to go back to the MTX.  I have swollen lymph nodes again (this time no huge lump or swallowing issues)but several slightly enlarged nodes and the “mumps” feeling again…I did find a local DR. that spoke to Dr. S and agreed to give me the Clindy IV boosts since I tested positive for a mycoplasma.  I had one IV a week before Christmas but haven't had any relief.  Dr. S said if it didn't work, I should go for another 5 day series.  I don't know if this new doc I found will be willing to do the whole series, as he says he hasn't dealt with many RA patients.  However, he is very holistic and open minded, and did take the time to call Dr. S…so we will see.  And he was very impressed when I showed him my CCP test results at diagnosis (59.9) and then in Aug after Clindy treatment (under 5). 

So now I am just worried about whether to take a short burst of prednisone? And why my lymph nodes are acting up again! Also, I am running low on my pain meds and am sure when my Rheumy (who Rx them) will be less than willing to refill when she finds out I am off the MTX.:doh:

I have been feverishly reading the board today trying to “catch up” with those of you who have been so kind and supportive and “meet” some of you who I haven't yet have the pleasure….I hope you all had a wonderful New Year and that 2009 will bring you success on AP!

 
Happy New Year!

Amy

(P.S.  My dad came through surgery well.  His cancer was more aggressive than was diagnosed with his biopsy.  At his 6 week check his PSA was undetectable…so we believe and pray that they got all the cancer!)
 

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[JBJBJB]

Amy,

I've been thinking of you. I am really glad the growth wasn't cancerous. Wow, you did not want to deal with any more stress. I also have some large lymph nodes.

I did my 6th months IV boost from home. It went well. I could breath better. It did not help my swelling fingers and feet. However it really short lived. I coughed more now than ever and my joints are very stiff. I need help to get dressed.

My work also gave me a lot of unnecessary stress. I had flare up before Christmas. It added more pain to my joints.

I am on pulsing right now. I will call Dr. S after the new year and see what I can do.

Glad to hear your update and your dad. Pray he will be in remission soon.

Happy New Year!

JB

 

 

 

[amyid]

Thanks JB! It was great to hear from you.

I am sorry you have been up and down so much!  Thank goodness Dr. S in only a call away.  How nice that you were able to do your IV boost from home!  I read in one of your posts that your hubby was helping and that you did some yourself (I think)…way to go!

I hope you get some relief soon…

:)Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[linda]

Wow, lots of stuff going on right now for you. So glad your growths were benign – it's interesting that I had 2 benign lumps removed from my right armpit when I was taking mtx, about 8 yrs ago. I hope you get your pain meds from your doctor, with or without mtx.  I'm a veteran of the drug wars, and I have to say that if I had to choose between mtx and pred, even a short burst, I would pick the mtx. I've been trying to wean off pred for over 5 yrs, and have suffered many side effects. Maybe a short burst of pred with the intent not to repeat it, and go back to mtx if the pred burst doesn't work? But then again, you've got that lymph node problem again, possibly from the mtx. Either way it's pretty much a pick your poison situation, difficult decisions most of us have had to make. A crystal ball would really come in handy. Are you taking any NSAIDS?

Best wishes for your father's health, too. Great news that they got all the cancer. Take care,

linda

P.S. I almost forgot, some people have had good success with MSM, in high doses I think. I have not, but I didn't take it in high doses. I'm going to try high doses of fish oil w/omega-3 – not omega-6; my sister has recently been diagnosed with PsA, only 30 yrs after me (so weird), and says she has been feeling much better since taking the fish oil. Again, I've tried fish oil before, but not in high doses, so I'll give it another try. She's also taking a vitamen with lots of B-6, 12, etc, which she says helps her energy level. Sigh…more pills, more supplements. Anyway, I wanted to make sure you knew about some other options.

[SusanSD]

Hi Amy,
   Glad to hear your update, and especially glad to hear your Dad did fine with the surgery. Cancer is very scary. I don't know what's up with your RA and lymph nodes, but I my mom has RA, and recently had enlarged lymph nodes. The docs wondered if her lymphoma from last year was returning, so they've scheduled scans. They want to do a biopsy. I wonder if your body isn't fighting some bug or another and therefore you're experiencing more symptoms.
   When I had the flu last year, my SD symptoms returned with a vengeance. It was a very slow recovery back to where I was. So I know that AP keeps my SD at bay, allowing my immune system to fight the buggers.
   JB, sorry to hear about your swelling in your fingers and feet. They were my first SD symptoms! I hope you were able to enjoy the holidays still.
   Getting ready for my IV-week next Monday (get them every 6 months),
   – Susan
   AP 2 yrs, SD 3 yrs

[amyid]

Linda & Susan,

Thanks for your kind words. 

Linda~I do take high doses of Omega-3's  I believe it helps…just not enough right now!:?

It is a “pick your poison” with the Mtx and Pred.  Maybe I'll see if I can get a week of Clindy Iv's from my Dr. here (If not I have to wait and get scheduled for IA again)  before jumping to the others. 

Susan~

I am sorry to hear your mom had lymphoma…I'll say a prayer that her scans all come back normal and it is just inflammation!

I see my ENT next week to have him check mine out…I am terrified deep down, this time it will be something bad…If I could keep my stress under control, it would sure help.  Course if I could figure that out, I would let you all in on the secret, cause I think it would help us all!!!! 

:blush:

 

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

Hi Amy,

By golly, you've been through a lot in the past few months. Really happy to hear your Dad is in the clear now and also that you got through your surgery with everything turning out well!  Whew, eh?!!!

You know, thinking back, in my first year on AP I'd get swollen neck glands off an on, too. Just a thought, but do you think it's possible that the removal of the thyroid growth may have caused a temporary thyroiditis? It may be as simple as something as that, so try not to worry too much (hard, I know) until you see the specialist again.

Amy, your CCP numbers are truly remarkable! Sounds like you're officially in remission?! Doesn't a result like this make it so obvious that what we're dealing with here is an infection? This number is never expected to come down for RA patients and is only ever used as a prognostic indicator of how serious the condition is expected to be! Well, be sure to pull those results out whenever you can and knock any disbelieving docs for six! :roll-laugh:

So lovely to hear from you again, Amy. Thanks for coming back to share your news and do hope this flare/herx passes for you soon. It's possible it's a delayed reaction from all the stress of the last few months, especially with the holiday season rush. Do what you can to detox, detox, detox….as well as keeping the lymph moving with some gentle exercise.

Wishing you and your loved ones a very happy, healthy new year!

Peace, Maz

[lynnie_sydney]

HI Amy, welcome back and to a New Year that I hope is good to you. You have had a rough ride. I think Maz may be right in that you may be having a stress related flare. Hope you get it under control very soon. I am also taking Biaxin and to good effect. Your numbers are excellent, so hope the clinical symptoms follow suit qyuick smart. 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)

[Kim]

Hi Amy, good to hear from you.  So sorry about all the worries, though. 

After 3 years of swollen cervical lymph nodes, I am finally getting mine to clear, but it is an ongoing effort because they want to clog up again.  I bought an infrared sauna which has helped tremendously with detox.  Before I get in the sauna, I use my Rebounder (mini trampoline) to get the circulation started, then when I'm in the sauna, I do some lymph drainage techniques the PT showed me.  For now, this is what's working for me.

Take care and let us know how you do…….kim

[kat]

Hi Amy, so good to hear from you! I'm sorry you've been through such a rough time but glad to read that it wasn't lymphoma (I would have been freaked out with those symptoms too) and that things are looking positive for your father.

I am sure you remember that we went to Iowa very close to the same time. I was doing quite well until late November,early December when I started going down hill again too. I see my rheum doc today to, once again, talk about some IVs here locally through home health care. Our insurance changed slightly with the new year and I am hoping that it will be enough of a change for me to get the IVs. Otherwise, its back to Iowa for me as well, although we certainly cannot afford the trip this time.

Again, good to hear from you and looking forward to hearing what happens as you get your next IVs and how/where you get them!

[Rockin Annie]

Hi Amy,

I don't know you as I am sort of new here, but very glad to meet you, you certainly are having it rough though at the mo., I am one of the MSM takers and love the stuff, I am also off Mtx and just starting to wean off my 5 mg of Pred, and not looking forward to it at all. When you start to have pain again I thinks its only natural to think about going back on conventional drugs. My Rheumy also didn't want to know me when he found out I was off all he had prescribed, such a whanker:blush:.

I hope you get through this rough patch soon and your dad stays ok, and will keep my fingers crossed for your visit to your Rheumy……………Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[amyid]

Maz, Annie, Kat, Lynnie, Kim and friends,

Thanks for your warm welcome back and advice.  I decided to forgo the MTX and prednisone and will have another round of Clindy IV's instead (much better choice)! I didn't think it would be possible as I wasn't able to travel to IA anytime soon.  I am happy to say I found a very open minded, holistic M.D. in my area.  He is not very versed in AP, but called me the other day to get more info from a patients perspective and has been doing lots of reading on his own.  He agreed to do my IV's…the only hitch is his office isn't open 12 hrs. so I will be doing one in his office in the a.m. and the other at home.  Since he (a MN licensed doc) is ordering it, my friend who is the RN is willing to do the night IVs.  I hope this all works out…I don't want to drive to Iowa in this weather!  I assume that I could still get my treatments at the Horn Mem. Hospital right?  Seeing Dr. S again would be nice.

I know there will be others in my area interested in whether my new Doc will be willing to assist others.  I have talked to him about it and he wants to wait and see how it goes with me first, but then he will be willing to discuss it further.  So I will try and be a good steward of the AP information and hope we may add him to the list of docs in the near future.

Hope everyone is doing well…

Amy

 

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[kat]

Hi Amy,

I just answered your PM and then just reread your thread  here. You know, the IVs can be as close as 6 hours apart, from start to start, they don't HAVE to be at 12 hour intervals if that would help with your scheduling. Also wondering that if he gets a line in you, maybe you could just do all of them at home after the first one? (at least until/if you need a new line?) Just my thoughts…….

Edited to add: Yes, you still get your IVs at Horn Hospital through Dr S, even though he is retired. I believe he starts 3 weeks vacation next week though.

[mommaof2princesses]

Hi Amy!

I am in IA right now. yes Dr S still does the treatments out of the hospital, and my treatments are 6 hrs apart (that is the minmum you can have them farther aart if you want to). Right now the weather isn't terrible just cold (brrr lol).

That is wonderful that you foundsomeone close to home to administer your Ivs! Good luck with them:)

[Kim]

Good luck with your IVs, Amy, and good on you for being the guinea pig with your doctor. 😕  Goodness knows, we need more AP docs, but, geez…….Minnesota……..that's as bad as Iowa in the winter. :roll-laugh:

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