I just got back from the doctor. My platelets have been stable at around 160ish for about 10 years. Today i find out they have dropped to 117… Which puts me back into the “monitored” classification (basically back to playing pin cushion monthly!).
I start working out, fighting through the joint flares, manage to lose 60lbs (so far) and think I’m doing awesome. Why does this happen? It’s so frustrating!! I’m working hard to get healthy and my body is betraying me!
Ok… I’m done venting! Better go jump on the treadmill and see if I can really tick of my immune system!!
Monthly??? I went through a hemolytic crisis 1 1/2 years ago and was on twice weekly draws for 3 months then weekly for nearly a year -just finished up monthly draws I hope- won't know til next month but maybe my Hct has stabilized at 30. Yes it seems to be never ending sometimes I dread going back to weekly draws again
I feel your pain....I lived with this for 2 and half years, blood draws every week....(mine was ITP) finally I got so tired of the high dosage of steroids that I told my doctor...he either do something or I will wean my ownself off the steriod which meant bleeding to death ...(in his eyes)....2 weeks later they removed my spleen. I went in complete remission...this has been since 1985....Not saying that is your all problems because we know how Lupus is....
Mine has also been dx as ITP. I’ve had it since I was a teenager. 117 isn’t that low so I’m certainly not in a crisis situation. It’s just that I haven’t had to play pin cushion in years and I’m not looking forward to it. The doctor said monthly for now and seemed more concerned that it dropped so fast… But I know from experience that they do that. I talked him out of sending me back to the hematologist. I’ve only been with this doctor for a couple of years so he hadn’t seen low platelets in my bloodwork before. I asked him if anything in my diet could be causing it… He said no. Just seems weird that when I am thinner the ITP acts up. I’m down 60lbs and my platelets are down by 62! I’ve still got 40 more to lose so it’ll be interesting to see what my platelets decide to do. Perhaps the physical strain from exercise is working things up? Oh well… There’s nothing I can do about it… Just really annoying.
At least you got out from under your hematologist for a while I was in remission for 20 years!!! before my last flare now just a low grade hemolysis mine affects mainly my RBCs but also my platelets and WBCs to a lesser degree Just hanging out on prednisone
Well I started the weight loss thing to avoid cholesterol medication. My bad stuff was at the higher end of normal and the good stuff was too low. So I figured I had to get off my butt and do something about it since I really didn’t want to add any more drugs to the mix. I started in November (when I got those results back). So 5 months later I’m down 60lbs and still going. I’ve had two nasty arthritis flares since I started. The worst thing is, although my bad cholesterol went down (yay!), so did the good stuff, so my ratio is still bad and apparently that is the part that causes problems. Now the dr thinks it’s genetic!! I don’t regret losing the weight and plan on losing about 40 more (I’m very tall so there’s lots of wiggle room with my weight numbers so it may even be more than that). I guess I’ll have to wait and see how the numbers go. He said the ITP has a different pathology than the arthritis so he’s worried that both are acting up at the same time. I’m 6 months into my wait to see the rhuematologist… Hopefully soon! I’ll just keep trudging along for now.
Hi Roni, I am so sorry to hear you rae back to where you were before again. I have been through a similar thing last year. My inflammation markers went right down for about a week and a half, they were going down gradually, and i thought at last i am getting somewhere, same with my blood levels were stable for a change. And i had lost 5stone which was a miracle. Then after a few months i was back to where i was with a high ESR, Haemoglobin dropping, platelets dropping etc. It is so disheartening. I have never really had a period of remission as such, that was the closest ever i got to having a remission period. Today i am sitting here in bed reading some posts and i am shattered, in pain and all swollen up again, and feeling like i could scream. Trouble is there is nothing we can do about what happens, so getting worked up about it all isnt going to do us any good, but its hard not to isnt it? I hope you start to feel abit better soon, and things start going in the right direction for you again. Take care, bye for now, love and hugs Astrid40xoxo
Yes… I tried the merrill brand that were recommended. They seem to have support in all the right places and lots of toe room. I’ve figured out it’s the incline causing the toe pain so only use it until my toes start to tingle… Then switch to flat walking. The combo of shoes and easing off the incline seems to work. I had three weeks were I was completely out of commission due to a sacroiliac flare. It’s starting to come back so I’ve been keeping the workouts breif and a little less I tense in the hopes of avoiding another bad one. I find sacroilliac pain the worst… Trying to do anything is agony and I get so bored!
Hi Rachel, that makes me so mad when they cant get blood and yet they insist on trying and trying again in roughly the same area. They cant actually get blood from my arm, so they have to use my hands. Sometimes they cant even get it out of my hands so they have to use my feet, and because my blood clots so quickly they have to try and be really quick in getting it, sometimes they dont manage so we have to go through the whole thing again on another site. As they need quite a few bottles for all the tests i have to have. Sometimes they do ask if they can try in my arm as they say they are more experienced, it always works out the same though with them scratching their head and saying well i dont know why i couldnt manage it, as i usually do. I say thats because my veins are deep seated and collapse when you get in there, so thats why they take it from the hand, as no-one can ever manage to get blood from the usual area, so they always use hand. Some doctors and phlebotomists just wont listen though. Although i do go to a regular hospital for bloods and they know me really well and just say ah yes, you are the one who needs it from the hand arent you? And some who know me really well ask how it is going with the Lupus. So i think it just depends on who we get doesnt it? I think i am so used to being poked and prodded about now. Although on a bad day it does get to me more than usual. I expect thats the same for any of us though. Anyway bye for now, take care, love and hugs Astrid40xoxo
Ann A. said:
I beautiful pin cushion.
Rachel Simpkins said:
Yes Im a PIN Cushion also :( but everytime I go I know and request the person who knows how to draw blood.
One girl totally made a mess all over my arm, freaked me out and ended up bringing me a bowl as I got so sick
Mine is an inflammatory (autoimmune) arthritis according to the bone scan. Apparently it shows up differently than arthritis caused by injury, wear and tear or structural problems.
I have been dx with psoriatic arthritis which is one of the spondylitis arthritis’s. I also have ITP and a positive ANA. I only have three criteria for a Lupus dx and was told I don’t have full blown lupus yet. My understanding is that the lupus arthritis and psoriatic arthritis are very similar. I have a lot of tendon inflammation… not sure if that’s interchangeable with the two arthritis types or not. When my sacroilliac flares, I can lay down and get into a comfortable position, but trying to do anything is agony. Seems like those joints are used for every move you make! I end up with swollen tendons which make a clunk noise and a sharp pain when they slide over the joint. So the more I move the more painful it gets. That leaves me pretty much bed bound watching tv for days. Generally I’ll feel it getting inflamed before it’s too bad and if I take it easy for a few days I can sometimes prevent it from getting out of hand.
Ann A. said:
Roni,
It took almost 29 years for them to figure out that the excruciating pain I was describing came from my sacroiliac. Immediately after the fall it got so bad that it would knock me to my knees in tears. Then two years ago my pain management physician ablated the nerves that lead to the sacroiliac - that brought enough relief for me to be able to think again. Then last year it was finally figured out that the cause of the pain in my right sacroiliac was that functionally my right leg is shorter than my left. The diameter of the calf of the right leg is actually two inches smaller than the left. Hope entered my life again in the form of 1/4 inch heel lift that goes in my right shoe. I am in pain right now largely because I have resisted wearing the heel lift all of the time. But the last flareup caused by wearing house shoes has me on the straight and narrow (I need to be able slip the shoes on, so I know actually wear two different shoes around the house). Another friend of mind who was having terrible piriformis pain (no one should know that they have a piriformis) discovered that she too was has a leg length discrepancy. It took three physicians and five physical therapists to decide which leg was the shorter one (because my pelvis is twisted one leg looks longer when I am on my tummy and the other looks longer when I am on by back). I know that not all SI problems are caused by leg length issues, but you might want to check it out. I mean a $5 piece of plastic is changing my life.
Roni said:
I find sacroilliac pain the worst… Trying to do anything is agony and I get so bored!
That is why I love this forum Ann! Others “get it” even if I just feel like I’m whiney… You lovely people get why I’m whiney!
It’s great that you found a solution that helps a bit with yours. From the sounds of it, yours is much more painful than what I deal with. Generally I can move, I’m just slow and if I move too much I get more sore. So in a way I’ve got a little bit of control over it.
I hope you feel better soon!
Ann A. said:
Then Dear Roni,
Just know that somebody else does understand what arthritis of the sacroiliac joint feels like. Last year it got so bad that I had bursitis in my ischial bursa and my trochanteric bursa I couldn’t walk and I couldn’t sit. I had to lay on my daughter’s massage table to write on the computer. I am whiney right now because it hurts. I want the pain to all go bye bye and I am having a difficult time getting myself to the “well it is so much better than it used to be” point. I do understand the difference between autoimmune and osteoarthritis. I had the first for years before I developed the later in several joints. And when the lift helps the osteo the auto is still there. So, I gotcha.
My hat is off to you for working with that pain! Go Roni Go Roni Go.
Roni said:
Mine is an inflammatory (autoimmune) arthritis according to the bone scan. Apparently it shows up differently than arthritis caused by injury, wear and tear or structural problems.