good/bad news

[Eva Holloway]

Linda.

I am so glad you are doing better, I know it is a slow going even with me. Keep :roll-laugh::roll-laugh::roll-laugh::roll-laugh: and keep on going. I am so glad things are working for you now.

My hubby got laid off on Thursday and we will have to go on Medicare, his insurance at work is running out on the end of the months. Oh well, we are both over 65 and have to go on Medicare. Dr. K told me there was no problem, the only thing I have to do is get the Minocin from Cananda. She will write the sript and fax it to what ever pharmacy I want to use. So I am going to set up all the info this months. I have refilled all my sripts already this week and even scheduled my appontments for this month. They told me I can go to any doctor I want too, wich I am so glad about.:doh:

Keep going, I pray for you,

Eva

Eva Holloway

[JBJBJB]

Linda,

Good for you. I hope it will last forever. Wow, lost 10 pounds, is that what you hoped for? If so, that was really good.  Hope your tummy will hold.

Eva,

So sorry to hear your husband lost his job. Hopefully he will get it back when the economy gets better.

JB

[linda]

I'm a little bugged out by the seemingly rapid weight loss and hoping it's not a fluke but is really the result of treating the thyroid and lowering the pred. I'm not too impressed yet, I gained 80 lbs, so I've got a long way to go. BUT I'm definitely smiling and glad the scale is finally moving in the right direction; I'd be happy with 2-4 lbs/mo as long as it continues to go down. Maz, I know exactly what you mean by peeling out of the swim suit, for me it's getting out of the wet sports bra :shock:! Zoinks, getting out of that is the toughest part of the workout. Sorry if this is TMI for the guys!

I didn't get to go to the pool today as they were cleaning it, but that's OK with me, at 95 degrees it's a really nice environment for bugs, so they can clean as often as they want. I also empathise with Maz and sometimes not being able to keep up with the geriatrics – I was walking down the hall the other day at the rehab center and got behind a man with a walker, I realised that I really wasn't walking fast enough to pass him, at least not with out demonstrating my 'Ministry of Silly Walks demo, so I just stayed behind him. Being forced to slow down is not always a bad thing, IMO we're all rushing thru life most of the time. It's that whole patience thing I'm working on, maybe I'll get it down by the time I'm able to get a job that I have to rush to!!!

[Kim]

Hey Linda,

My guess would be the weight loss is more the pred reduction than the thyroid meds.  I've been on thyroid meds for years now…..different types, different doses, and no weight change.  The only time my weight changed and was thyroid related was when I went from hypothyroid to hyperthyroid for about 6 months.  Now I'm back hypo.

You and Maz are too funny with your garmet issues, but I can totally relate.  I was able to find a sports bra with hooks in the front which makes life easier, and don't worry, before long you'll be able to take that guy in the walker. :roll-laugh: 

kim

[linda]

I've officially hit the wall. I tried every which way I can think of in taking these abx orally, but I can't get my stomach to stop hurting. If it was just a little ache, nausea or heartburn, I could handle it; it feels more like someone kicked me in my abdomen and left a large bruise (no one has kicked me, I promise). I need to see Dr. K in 2 weeks, and if she doesn't want to do the IVs, I'm just about out of options.

I've been a good girl and stayed on the diet, and also have continued to reduce the prednisone. I'm down to 10 mg q. day this week, then the following week I go to 7.5 mg alternating days with 10 mg. Within a month I will have reached the goal she gave me of 7.5 mg daily, but MY goal is 5 mg every other day. I'm determined to do this no matter how bad I feel, it has nothing to do with being able to continue AP or if the enbrel is working. My weapons are hydrotherapy and acupuncture, and much like I feel about the vicodin that I stopped taking several years ago, as in I'll never take it again, that is how I feel about the prednisone – 5mg q. other day- no more, no less, no matter what. I feel absolutely cruddy and I'm sure I will continue to feel worse, but in the long run I will feel better.

If I can't find someone to do the IV abx I'll just have to get by with managing my disease with biologics and alternative therapies. Maybe after a year or so off of prednisone my stomach will heal enough for me to try abx orally again. But right now, I'm just really feeling tired and frustrated, mostly because I didn't find out about AP sooner before my stomach was such a mess. C'est la vie, we just keep going with the tools left to us. Of course, I could always get a nice surprise and Dr. K will take on the insurance company and I'll get the IV's! Maz, get those fingers and toes ready to cross again!!!

[Eva Holloway]

Linda,

I hope Dr. K will listen to you. Yes, the prednison can do you in. Check with Dr. K if there is any other product you can take to get your stomach back in order. Writer her an e-mail. She does answer some of them.

Hope you feel better soon.:( 

Eva

Eva Holloway

[Kim]

Linda,

Sorry to hear you've hit the wall again, but we all know you're a fighter and will not cave.  You make a compelling argument with the need for IVs, and from what I understand, Dr. K. is a very reasonable doctor so hopefully you can work it out.

Good job on lowering the Pred………I'm sure it's not easy.

Hang in there……kim

[Trudi]

Sorry to hear what a tough time you are going through.  I wish you the best and will keep you in my prayers. 

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=11]linda[/user] wrote:

If I can't find someone to do the IV abx I'll just have to get by with managing my disease with biologics and alternative therapies. Maybe after a year or so off of prednisone my stomach will heal enough for me to try abx orally again. But right now, I'm just really feeling tired and frustrated, mostly because I didn't find out about AP sooner before my stomach was such a mess. C'est la vie, we just keep going with the tools left to us. Of course, I could always get a nice surprise and Dr. K will take on the insurance company and I'll get the IV's! Maz, get those fingers and toes ready to cross again!!!

Linda, so sorry your stomach is giving you such pain. I think you're right that the pred is probably the biggest offender here. After many years, it causes thinning of tissues and any medications going through the stomach causes irritation to the stomach lining. Ulcers can be a real problem for people on pred.

I'm frustrated along with you that you found AP so late and IVs may well be your answer to bypass your gut. 🙁 If you had to pay for the IVs out of pocket with Dr K, would you try that if worse came to worst? This insurance thing is such a pain in the neck.

Alternatively, there is a Dr S in Houston who does IVs and you could put in a call to her office to see if she'd take your insurance. Might be worth a flight, especially if she could get you set up with subsequent home infusions. I know of one patient in Houston (she was highlighted in the last eBulletin) who sees this doc and has monthly IVs…she lives in Houston, though.

Just trying to think of alternatives here for you, Linda. My fingers and toes are duly crossed for you again!

Peace, Maz

[Eva Holloway]

Maz,

can you please give me Dr.S name in Houston in a PM. Just thinking and wondering .:D

Eva

Eva Holloway

[Maz]

[user=236]Eva Holloway[/user] wrote:

can you please give me Dr.S name in Houston in a PM. Just thinking and wondering .:D

Eva, just sent you a PM with this info. 🙂

Peace, Maz

[Parisa]

Linda,

What with Cytoxan and prednisone and then antibiotics my husband's stomach was a mess too.  What a relief when we switched to IV.  It has really helped his progress.  One I think the IV antibiotics penetrate at a deeper level and two it allowed his gut to heal which we all know is crucial to fighting these diseases.  Good luck on getting IVs authorized.

[linda]

I discussed the cost of the IVs w/out insurance with Dr. K when I saw her last, btw, she's only an hour farther away than Houston to me, anyway, it's $400/day for 10 days, not including food and hotel costs. NOT an option, even if it were once a year. I will check out Dr S, Diane has PM'd me and I will get the info from her, but she said that Dr S does not accept insurance and the IV's are $100. A fourth of the cost but still expensive since I'd have to find food/hotel. It may not be that much cheaper since there is a hospice in Lufkin for $20/day if I go to Dr K.

We are just not having fun right now. The enbrel is not working, not a big surprise since it wasn't that effective 6-7 yrs ago. The only biologic I have not tried is Orencia, and it is not approved for PA yet (don't even get me started on THAT issue). I've never been impressed with this rheumy, I only went to him b/c he supposedly was willing to rx minocin, but actually he's not willing to try anything out of the norm and his staff is rude and incompetent. I asked the rheumy to check on a new, safer biologic just approved by the FDA for RA, PA and AS, called Simponi, only to have his nurse call me to tell me that the doctor could only find approval for this drug in Canada on the internet. On the internet? Where was he getting his medical information before we had the internet? And who does he think the FDA approves drugs for? Canada? Oi, I'm po'd. Last week the lab tech drew blood w/out wiping my skin with alcohol first. She stuck the needle in before I could even stop her. Not a big deal to them that I, like many of their patients, am on an immune suppresing med, I guess. When I first went to this office, it took 2 months of mistakes with insurance and ordering the wrong med, not ordering the med, and cancelling infusion appts before I could get a remicade infusion. I honestly have never had as much trouble with physicians and their staff as I have had in the past 3 yrs, beginning with the AP doc in AZ. Is it just me, or is this happening to other people? I need to get on a med that works, esp now that I'm weaning off the pred, but that means I'm going to have to find a new rheumy; at this point I'm very gun shy of finding a good physician and office staff. The only good doctor I've found is the endocrinologist I'm seeing.

OK really bad rant, there. Sorry about that. AAAnnyway, I will e-mail Dr K and see what she can do as far as the IVs. I've heard of uphill battles, but this is getting ridiculous!!!

[Parisa]

Linda,

Would either of these doctors order a port?  A port would lie under the skin completely unexposed except when you need it.  Then you could see a nurse who would access it with the needle and from that point you would be on your own.  This way you would only have to pay for nursing care for the first day, just to access the port.  You could get the prescription and order from an infusion company probably for alot less and you could do it on your own time schedule.  I know you'd have to hop through alot of hoops to make this happen but just wanted to mention it.

[linda]

Back from the endocriny, and more bad news. The thyroid is even lower, and the fasting blood glucose is higher. There's no pussyfooting around this anymore, I now have type 2 diabetes and have joined the ranks of those who poke themselves several times a day to check blood sugar levels. It may still be reversible, but probably not. At my last appt my liver fuction tests were off, but today they are completely normal. Last time I had dc'd the milk thistle for over a month before the app, this time I had restarted the MTH 2 months before my next labs, and the liver is back to normal. Anyone having abnormal liver tests should give it a try. BTW, my current rheumy has all of these same results, and continues to tell me that my labs are fine. He's fired.

The Plan:  Add glucophage to the Glycet to help maintain blood glucose levels.
                 Double the dose levothyroxin for the thyroid.
                 Keep doing water therapy.
                 Keep taking milk thistle.
                 Continue to decrease pred – currently at 7.5mg/10mg alternating days.
                 Decrease pred to 7.5 daily in 2 wks and meet Dr K's goal.:roll-laugh:
                 Try to get Dr K to agree to IV abx, if not her, then move on to plan B? C?
                 Whatever. Find a doc who will do the IVs that I can afford.

The second part of The Plan: See my new rheumy in July and start on the new biologic that I have no antibodies built up against yet.
When that med starts working, decrease the pred the rest of the way down to 5 mg q. other day,  AND NEVER INCREASE IT AGAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
If no luck on the IV's yet, try to find a GP here who will do it for me.
It's the last piece of the puzzle, and the most important piece, but it's also the one that I'm having the most trouble finding. Arggghh.:angry: (we really need a pirate emoticon)

I'm convinced more and more that having a chronic infectious illness is a full time job. I could make a power point presentation of that plan and present it to doctors who are treating chronically ill patients who are now experiencing complications from longterm pred use. I could make one bullet just for the dangers of steroid therapy, a whole section on the infectious theory and mycoplasmas, Lyme dx. Another section on the types of abx used and why, and another section on the methods of administrationn of the abx and the different dosing schedules. Then of course, there's a page on herxing, another for detoxing, ect. That's what I'll do, and I'll get a whiz kid to sharpen it up; then tour the country, get on early morning talk shows, and even the Holy Grail of all talk shows, The Colbert Report. I'll turn the world around and all patients suffering from AI diseases will be given AP/MP free to compensate for all of their yrs of suffering.  Instead of Dark Lords of Rheumatologists and bureaucrats:sick::sick::sick:,  you shall have a Queen; :dude:, all shall love me and despair! (you'll only get this if your a Tolkien freak like me)

Hey, a girl can dream, can't she?!;););)

Apparently not sleeping for 48 hrs has made me a liiittle silly, so I'm going to go and try and get some sleep before I solve world hunger.

            

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