Feeling Grateful

Hi all, this is my first post and I really just wanted to say THANK YOU. I was diagnosed in July of this year with a count of 9 and as I'm sure you all know its been a confusing and frustrating journey. I was lucky enough to find this site early in my search for answers...I check it often & everyone who posts here has helped in some way. Since my diagnosis in July I've found a great Hematologist & run thru SEVERAL treatments to no avail. I've just decided to give the splenectomy a shot. I know there's a lot of debate on splenectomies but I'm feeling defeated so far since I haven't responded to any treatments & hoping to reach remission someday.

Anyhow, I really just want anyone who's reading this to know that I'm grateful for you and your story, you give me guidance when I'm scared and confused so please keep posting! I'm looking forward to my second post being an update on reaching remission & I hope you all stay well

Hello Mel. I'm glad you decided to introduce yourself. Good luck with the splenectomy and please let us know how it works out.

Hi Mel - You do what you is right for you! Good luck with the splenectomy - I wish you success! Do give us an update!

Just like Mel, I am a brand new member. I have been reading this site for years but not until after I had my speen removed. I went that route 5 years ago because I didn't relish the prospect of living on prednisone. Each time I was weened off prednisone, my platelets would dive. About six months after spenectemy, my platelets fell again and I did IVIG treatments once a month for the next 6 months but my platelets continued to fall once treatment would wear off. My hematologist suggested Nplate and I have been on that for the past 3 years. I am not one to normally share my personal life (I don't do Facebook or anything else online) but felt compelled to finally join this site because I have noticed that there doesn't seem to be many here that also have Sjorgrens. I was diagnosed with that about 2 years ago when my hematologist was trying to find the cause of my ITP. I tested a high positive for both the antibody indicators of Sjogrens. While I don't seem to suffer from the normal maladies of Sjogrens (dry mouth and eyes), I had always complained to my doctor of painful glands in my face. My family doctor said I had Trigeminal neuralgia years before I was diagnosed with ITP. I had also been taking a low dose birth control for the treatment of adult acne since about the age of 45. It not only solved me acne problem but also regulated cycles that had started to become irregular. I am now 56. When I quit taking the pill because of my age (at doctor's request) I suddenly developed severe joint problems. I didn't know whether to attribute it to Nplate, Sjogrens, age, or what. They can all have that affect it seems. I tried going back on the pill for a short time and the problems got better. When off again (because I enjoyed the fact I had no monthly cycle for the first time in my life) problems returned. I also suddenly developed tinnititis in right ear and lost high pitch hearing virtually overnight. Family doctor put me on high dose of prednisone (while still on Nplate) and my platelets soared to over 650. I then endured 4 rounds of steroid injections to inner ear that didn't help. Sorry for the long-winded account, but I am hoping to prompt further discussions in this area. I think my problems relate to hormonal problems and am considering Hormone replacement therapy. Looking forward to everyone's thoughts.

There are so many different reasons for things and I couldn't begin to make a guess. None of my problems seem to be directly related to hormones, although that connection is quite common for females. I've never been on BC pills, but have quite a few different health issues that have all occurred at different times in my life. ITP at the age of 35, Lupus at the age of 45, menopause at the age of 46. In between, I have had herniated disks, spinal stenosis, otosclerosis (hearing loss in left ear), chronic nasal congestion, strabismus, RLS, sleep apnea, neuropathy, paresthesia, myalgia, arthritis, low Vitamin levels, and swollen joints. Lately I have also had problems with dry eyes and cotton mouth, so I am going to ask to be tested for Sjogren's next week.

There are others here who have multiple problems; that can be common with autoimmune disorders. I never know what causes what either because many medications can also cause side effects that you may not link to the drug. I can't even begin to figure myself out, so I'm not sure I can be of any help. Also, I am not a proponent for HRT due to the negative affect it can have on autoimmune disorders so that's not something you'd want to discuss with me. It is interesting that your joint problems seem to get better on BC.

Have you seen a Rheumatologist about any of those things?

I have talked to my rheumatologist and he did X-rays and scans of my hands, shoulders, etc to begin monitoring changes but there was nothing significant that he found in his tests, even though I have difficulty raising my arms above my head. I also had steroid injection for trigger finger on the middle finger of my right hand. Have since developed the trigger in my ring finger and the middle finger of the left hand. I can't close my hands in the morning. My right hand goes numb quite often. I saw a neurologist too and he said I was in the early stages of carpel tunnel. I wore braces at night but it didn't seem to help. I don't take any other medication other than Nplate except for NSAIDs when joints are really bad. I try to avoid drugs and would even try going without Nplate after having read on this site that many people live with very low platelets but my husband won't hear of it. He's afraid I'll drop dead! I'm also afraid that if I stop, I would have to battle insurance company again if I needed to restart treatment.

I am still interested in hearing about any negative affects of HRT. I am trying to weigh those against my growing immobility.

I've researched HRT and for every article I've ever found that says there is no harm in it, there is an article stating that there can be. I'm not willing to take the risk for several reasons and have discussed it with my doctors due to menopausal symptoms. The article below states that is may be okay for RA but not Lupus. If you could figure out which way you seem to be going, it might help with the decision.

I think the biggest risk is clotting. I have antibodies that can cause clots (many ITP patients do) and actually take aspirin to try to prevent it. Since N-Plate can cause clots, splenectomy can raise clotting risk and BC can cause clots, that would be one area you'd want to check out before considering it. That can be just as (if not more) dangerous than low counts.


The effects of hormone replacement therapy on autoimmune disease: Rheumatoid arthritis and systemic lupus erythematosus
Climacteric, 07/13/2009

Holroyd CR et al. – Review discusses the effect of sex hormones on the rheumatic autoimmune diseases, with particular emphasis on systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). Main points of discussion:

There is much evidence supporting the role of estrogen in the pathogenesis of SLE
SLE occurs much more frequently in women, especially during the yrs of child-bearing potential, and commonly flares during pregnancy
Exogenous estrogens have been historically avoided in women with SLE
Current evidence from prospective trials suggests that there may be a small increased risk of mild/moderate flares in women with SLE taking hormone replacement therapy (HRT)
In RA, HRT does not appear to be associated with an increased risk of disease flare and may actually improve disease activity
In all individuals with autoimmune disease, the risk of venous thrombosis associated with oral HRT is an important factor that should also be considered.

www.mdlinx.com/rheumatology/news-article.cfm/2791761/hrt-ra-sle-autoimmune-disease

Thank you for that information. It actually helped me with my decision. I have been tested more than once for Lupus because I think my doctors have always leaned toward that as an answer to many of my symptoms but, as far as I know, I don't have that. I have always felt my problems seem more arthritis related. I was told that my RA factor was very high but that I don't have the true signs of rheumatoid arthritis and that I have osteoarthritis. Just the fact that the article says that in RA "HRT does not appear to be associated with an increased risk of disease flare and may actually improve disease activity" helps explain why taking BC helped my condition. I am not so worried about blood clotting. I knew I was taking that risk when I was on BC but it was worth the risk to me.

Heartfelt wrote: I knew I was taking that risk when I was on BC but it was worth the risk to me.

That risk is tri-fold now. Just be aware of that.

Why do you think the risk is tri-fold?I already had the ITP and Sjogrens when I was on the BC before. Is the HRT higher risk than BC?

1. After splenectomy, patients with ITP have a higher risk of venous thrombosis and sepsis than patients with ITP who do not undergo splenectomy.

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

2. Higher risk for blood clots:

You may have a higher risk of getting a blood clot if your platelet count becomes high during treatment with Nplate®. You may have severe complications or die from some forms of blood clots, such as clots that spread to the lungs or that cause heart attacks or strokes. Your healthcare provider will check your blood platelet counts and change your dose or stop Nplate® if your platelet counts get high.
If you have a chronic liver disease, you may get blood clots in the veins of your liver. This may affect your liver function.

www.nplate.com/

3. HRT or BC