Update and test results

[Tiff]

Hi all,

I have been waiting for more time to pass before updating my situation so it might be more clear, but things are flying in all directions in my life, so that might not be possible.  Instead I'll do a brief update and just wait and see what happens next.

I've been on the Orencia infusions for just over 2 months.  The first month was gawd awful, wish I would have Herxed like that on AP or the MP.  I had to take prednisone it got so bad or else I could not have made it to my doctor in San Antonio!  But that popped me out of my death like state and I have been going strong since then.  Have no idea how much of it is the 10mg/prednisone or how much is the other treatment, but the change is beyond dramatic.  I feel 85% better, really more than that, but I say that because I have had some mild, transient joint pain that is a reminder of the demon within.  I feel 110% better regarding fatigue and mornings.  I haven't ever liked mornings, but now I feel pretty well when I wake up.  This is what other people feel like all the time??? Not fair!

A couple of things are clear, however, so I need to present them.  In this 2 months my hemoglobin has returned to normal after 3 long years of constant and worsening anemia.  This is without a doubt the Orencia since the change happened before I went on the prednisone and the prednisone I took over the summer did nothing for my anemia.  Also, my blood pressure has gone from 100/64 to 120/75.  Not sure if that is a good thing, but I sure feel better with some oxygen in my body!  My thyroid levels dropped dramatically requiring a thyroid dose change for the first time in 6 years!  This means my body has dramatically changed how it is using this hormone.  My TSH was 0.9 before the treatments began (this is normal for me as I am a thyroid cancer patient and they suppress TSH to low levels to discourage cancer cell regrowth).  It went to 4.62 while being treated.  Naturally I have increased my meds and feel better from that as well.  No wonder the first month of treatment was so awful.

The other thing I want to share is that today I had a bone density test.  I had this done 3 years ago before I got sick and it was normal.  Today it shows early stages of osteoporosis.  I have lost a lot of bone in 3 years.  I am so mad at myself.  I feel it is a direct result of the disease process, but I certainly did not get any help from doing the MP, and it probably made it worse avoiding excercise, calcium and vitamin D.  So, let that be a wee bit of data for anyone thinking about that approach.  PLEASE be careful about that.  I will never get that loss back, and I am now at the bottom of the “borderline” range and any more loss is really bad.  :crying:

So now I am throwing everything at this issue.  I am taking 100mg/day Mino, Orencia, low dose MTX (they give this in adjunct with the Orencia for several reasons), and prednisone!  Plus all my supplements!  I'm a walking, talking pharmacy!  I hate it, but I am OUT OF BED finally.

For clarification, too, Orencia is not a TNF blocker.  It blocks white blood cells and is the newest drug that I know of on the market right now.  It was given to me because I have a history of skin cancer and the TNF blockers are known to increase the risk for this type of cancer.  Orencia does not work as quickly as the TNF blockers which is why they are letting me stay on the prednisone for now.  We are moving soon and my doc doesn't want me to go off of it until things settle down.  I was waiting to get off of it to post, but that will be a while so I decided not to wait.

Make no mistake, I have little faith in my situation.   I mostly feel like a dying person just making do until the end.  With this approach, I have no real long term hope at this point.  The changes on the Orencia are interesting though, and  I wanted to give folks a heads up about the bone density stuff.  I got all that loss while on AP/MP, so those things are no cure all for that problem.  Make of it what you will.

[Suzanne]

[user=45]Tiff[/user] wrote: 

  Today it shows early stages of osteoporosis.  I have lost a lot of bone in 3 years.    I will never get that loss back, and I am now at the bottom of the “borderline” range and any more loss is really bad.  :crying:

My mother had the same dx and they recommended one of those drugs like Boniva.  She refused and started weight-bearing exercises and supplements.  Her bone density is normal now, so do not give up!!!!! 

I'm glad you are feeling better!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

[user=18]Suzanne[/user] wrote:

[user=45]Tiff[/user] wrote: 

  Today it shows early stages of osteoporosis.  I have lost a lot of bone in 3 years.    I will never get that loss back, and I am now at the bottom of the “borderline” range and any more loss is really bad.  :crying:

My mother had the same dx and they recommended one of those drugs like Boniva.  She refused and started weight-bearing exercises and supplements.  Her bone density is normal now, so do not give up!!!!! 

I'm glad you are feeling better!

Thanks, Suzanne.  That is very encouraging.  I suspect they will be reluctant to even suggest the meds for this with everything else going on right now.  Since I am loaded up with supplements and clearly less “inflammed,” I think they will just want to watch it for now.  If that is not their plan, it certainly is mine!  😉  I am moving to a place that will have an exercise room with weights, so I HOPE to be able to do some of that soon, too.

I was under the impression that you could not regain the bone lost so returning to the “normal” range would not happen, just stopping the loss.  But I have also heard that weight training adds bone mass, and they claim the meds can reverse the loss, so it must be possible.  I feel sure that whatever catastrophic thing I have been dealing with for the past three years is the real culprit (before that really), and I think getting the monster of inflammation reigned in will do wonders.  If it takes every weapon to do that, so be it!

[Lizz]

Tiff, I'm just sooo glad you're feeling better-that says alot! Quality of life is such a big issue with these insidious diseases. Not to mention, with the inflammation down, you'll start to see a boost from the AP. I too think you can turn the bone loss around as things continue to stabilize for you. God bless!

[bonnielou]

Hi Tiff. I am also in osteopenia (the precursor to osteoporosis). I am female, petite, white and post menopausal — all of the most likely indicators. I started using fosomax a few years ago, but stopped it after about a year. I really don't trust that medication. My bone density tests have not been steady, (some up, then down again) — but the decline is real.

It's worrisome. Of course I avoid milk — get calcium from yogurt (which I can tolerate for some reason), spinach and the like — as well as supplements.  I am starting physical therapy with a group here that focuses on bone health. I hope their exercise plan can help me. Because you can rebuild bone strength. It is definitely possible. It's just hard to focus on so many fronts at once.

I don't like hearing you talk about having no real long term hope at this point. It looks like your body is stabilizing — and you just need to keep making the adjustments that let you live as healthy a life as possible. I recommend reading the book “The Myth of Osteoporosis” by Gilian Sanson — lot's of good bone health advice there. Stay in touch, and good luck with your move. That can be a very stressful event.

Bonnie

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!

[Kim]

Tiff,

Sorry things have so rough for you.  I have full-blown osteoporosis and refuse to take any of the bisphosphonate (sp) drugs like Fosamax and Boniva because I don't trust them either.

I know Prednisone is getting you over a rough patch, but it is really bad for bone loss.

What I do to try and build bone density is use a rebounder (don't use a cheap one because they will do more harm than good).  I also just started using a vibration platform made by Soloflex that has been shown to improve bone density, but I haven't had it long enough to tell.  You can research whole body vibration exercise.  I'm sure you already know it has to be weight-bearing exercise.

I sure don't have a grip on my osteoporosis yet, but just throwing out some suggestions.  I also know that too much thyroid hormone can leach calcium from your bones.  Sheesh!

Take care…..kim

[Eva Holloway]

Kim,

I did the vibration platform for nine months and I think it did help me, the only problem is that the Prednison has done a lot of damage and it ill take still a long time to get my bone density back to a better place then now. At least I have only pain  in the mornings when I get up, after moving around I do okay for the rest of the day and I also think that the LDN is helping in this situation. Today I started to knit without gloves on and the girls in my knitting group remaked about it that even my hands are looking less red. I have been knitting on a constant basis for many years even when I was very ill, It gave me some accomplishment

Tiff,

I am glad you are out of the bed, I know the feeling. There used to be a time I spend about 20 hours a day in bed and just was able to put something on the stove that came out of a box. Now I am up and about and all my meals are cooked from scratch. Lots healthier and less fattening.

For your own sake please don't give up, I know the feeling and I think a lot of us have been there too.:sick: I will pray for you to keep up your strength and courage to fight this illness. Some days I had wondered if I ever would be well again. I am a long way from it, the DM has a grip on me and is only letting go slowly. I still have a wheelchair in my van and do have to use a cane when I go walking or :(to the store or mall. I think every one of us is different in the medication we take because we have different auto-immune illnesses or combiations of them

Eva:)

Eva Holloway

[Tiff]

Thank you all so much for the thoughtful responses!  I am out of town today, but I will add some more thoughts and a couple of questions when I get back home.  Such a puzzle all of this!  Hope you all had a good weekend!

[Author]

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