joint pain and fatique

I have not been on this site in quite a few years. I have had ITP for over 33 years.
About 10 years ago my counts starte dropping and dropping went down to 4,000.
I was put on prednisone; which was horible, mood swings, not sleeping, just awful
I tired Rituxan, after a year my counts went back down to 4,000 and wouldn't go back up.
Then I was put on IVIG, my count were OK on this, but I was sick weeks out of the month. I had flu like symptoms and severe headaches.
I was on this web site and saw the study for AMGEN 531 (Nplate) I was in the study out of Boston for over 3 years. My counts were great 124,000 most of the time and I felt great. Now the study has ended and with the Nplate I would have to go to the doctor's office once a week. I decided I didn't want to be tied down like that.
I asked the doctor if I could try Promacta. I have been on it almost 2 months now. My counts have been up and down 64,84, and 44.
I have noticed over the years that I can feel when my counts go down. I get joint pain, fatigue and depression. I can almost tell to you what my count is by the way I am feeling and i am usually wright.
I have been told my Dr.Kuter in Boston that; yes fatique, joint pain and depression can be part of low counts. He said that they have found that platelets carry serotonin.
My local hemotologist seems surprised that I have these symptoms and does not necessarily feel that the serotonin in the platelets would affect depression, but I have lived in this body for over 50 years and I have lived with this illness for about 35 and I have had these symptoms for years.
Does anyone else experience these symptoms.
I know it is a question I have asked before, but I am at my wits end trying to make doctors understand. My local hemo feels if my counts are 20,000 or above I am safe.
I have found that I can not function when my counts are 50,000 or below. I have all of the above symptoms. I really have had enough; when I feel like this, it feels like I can't go on anymore......
Vickie

Hi Vickie,
I'm very new to this ITP thing, only a month or so since diagnosis. I've only ever been on prednisone and it's doing absolutely nothing for me as far as the count, but the side effects are terrible! I am tapering off it now and not liking any part of it. I have the mood swings, depression and some pains, but I thought it was from the prednisone. I guess we'll see what the future brings regarding that. I was to start Rituxan tomorrow, but just found out today that they are going to use NPlate instead.
I'm seeing that you can go on! Your still here! I'm thankful for that. I'ts nice to be able to talk with someone who has a little more "experience" in this area!
Looking forward to talking with you more.

Hi, I had my speen takn out in 1995 and my counts have been great since then, they stay in the high 450,000 but i hurt all the time, i was on prednisone for almost 5 months in 1995. It isn't good for anyone, but just wanted to give you good news of me hurting all the time in the joints and muscles still. sorry. Best of Luck, Sharon

I also get pretty major fatigue when my counts are below 50. I agree, I would prefer treatments to keep them at that level even though I don't have bleeding even when they are lower. And I also have problems with my doctors understanding that fatigue could have anything to do with my platelet count.
Erica

Well, if symptoms are changing, maybe it's time to look into things a bit further. Maybe you have low B-12 or potassium. Maybe you should have an ANA done and a SED rate.

It could be that years of meds are finally catching up with you or you have something else going on. I don't think I'd just be happy with "It's part of ITP" because it's not part of ITP for everyone.

Hi Vickie,

I actually associated fatigue with increase in counts. While on prednisone, i noticed that if I got my blood test done after I had a couple of days of low energy, feeling extremely exhausted, my counts were actually higher. However on weeks that I felt "normal" my counts either dropped or stayed the same.

As for the joint pain, I had annoying joint pain while I was tapering from 20 mg to 10 mg the first time around. Unfortunatly my counts dropped so I raised my pred dose and the pain went away. When I started tapering again I had no joint pain but I was depressed and cried alot. Eventually, all those side affects went away.

Michel

Hey there. I was diagnosed a month ago too, and am also on prednisone 70 mg right now, and counts are dropping. They werew going to start Rituxan tomorrow, but put it on hold...I did, because ithink i want another opinion.
Why did they change yours? It is good to talk to someone going thru this at the same time.
I noticed tonight my knees and ankles ache!

Vicki, I'm sending you a virtual hug. The long term impacts of autoimmune conditions can get to all of us, and I'm hoping that your feeling a bit better.

I have to wiegh in with Sandi, it may be time for an overall checkup and metabolic panel blood test. If we have one autoimmune condition, we are more likely to have others and the many of the symptoms overlap.

Everyone of us is different at the points where we see symptoms. For me fatigue from ITP doesn't come for me until I'm under 20-30K. Otherwise, if I'm having fatigue it's usually because I need to adjust my thyroid meds or getting tighter control on my sugars.

While there are the "standard" range of symptoms for thyroid conditions, there are a good number of symptoms that are a trend in the chat rooms, but not consistent enough for the medical field to acknowledge them. For instance, for years my mom would just hobble for 30 minutes every morning until she limbered up from pain in the bottom of her feet and the doctor called it arthritis. When I started showing the same symptoms, I just thought it would be my lot in life also. Symptoms stopped within 2 weeks of starting Levoxyl for me. I forced my mom to be tested also (we have a family history) and her symptoms also stopped with thyroid meds.

Symptoms of bone pain and muscle weakness can mean you have a vitamin D deficiency. I don't know if the test is on the standard panels. It's becoming really common for endos to have diabetic patients tested for it. We had a recent thread on the old board about Vitamin D and autoimmunity that drew a lot of comments. discuss.pdsa.org/topic.asp?TOPIC_ID=25338&SearchTerms=vitamin+D

You might also want to do a search on the PDSA site for articles on fatigue and depression and back them up with the list of Medical advisors from the press kit and provide the print outs to your local hemo in a non threatening casual manner, just something he might be interested in.....

I can almost predict when petechiae will appear on my daughter's legs from her change in behavior. She has normal counts unless she has a virus. When the platelets crash while fighting the virus, she just droops and even mumbling is too much effort and she's grouchy. Then when her platelets rebound about 3 days later (if a normal cold) she is completely worn out and exhausted, like her body is preoccupied.

But when I hear sore knees and fatigue, I think Lyme disease, which can be difficult to diagnose since severe cases have all the antibodies bound up and the blood test can be negative. The same ITP daughter had it and had severe headaches, no energy, sore knees, sore back at times. It got so bad she had only about two good hours a day. Not good for school! It was misdiagnosed as mono when it started, seemed to get a bit better then got lots worse about 5 months later. Lyme goes to different parts of the body on different people,for her it was neurological and affected her memory of that time period. Her platelets were not affected by Lyme but were by ehrlichiosis (it started her ITP episodes) which is often a concurrent infection with Lyme,. After a short treatment with antibiotics, her blood work turned positive and she received the longer antibiotics needed to eradicate Lyme.

I'm noticing pain and fatigue when I don't eat enough and even worse when I don't drink enough. I've never been much of a water person, but lately I sure am! I gotta remind myself all the time to keep a water bottle with me.

hiya vickie! hey, i'm sorry u feel so low. i know how u feel vickie. steroids dont work for me, the ivig gives me unreal headaches and after it i feel like i have no energy and cnt do anything. and i also feel very low when my platelets are low n its true that there might be a link between itp and depression, i actually googled 'depression and itp' because i felt low with no real reason to. maybe its the lack of serotonin! strange! i know how it feels to be so frustrated by all this and u feel u are the only one who truly cares! not that people dont care but u know what i am saying, it just feels like your are constantly going throught the motions of this thing! annoying! and.... i am only 28 and since i went off the steroids i have the achiest bones ever. it hurts me to use my hands. that has to have something to do itp or prednisolone as i am a very healthy woman aside from the itp....add me if u wanna talk, i think we have alot in common! good luck vickey x

Hi Vicki,

I was diagnosed with ITP in 1982, at that time my count was 10,000. I went through 3 months of prednisone and my count was ok as long as I was on the prednisone. I was the most fatigued than I've ever been in my life, but that was the only sympton I remember having. However, as soon as I started tappering off of the prednisone, my count starting coming down again. I'm assuming back then that all the new drugs they have out now were not available, so I cannot comment on any medications they have now for ITP. My options, at that time, were to live with taking prednisone or have my spleen removed, I chose the later. As soon as my spleen was removed, my count jumped to 520,000. I thank God everyday that my count has remained around 250,000 or higher. After having my spleen removed I started having severe allergies to everything and anything that has a smell to it. I get infections (bronchitis or worse) from smells, ie., perfume, lotions, cologne, cleaning chemicals, etc. and Ihave to take prednisone. Please hang in there, I know how scary and hard it can be. Best of luck!

Wanda

Thank-you everyone. I needed the virtual hug
It is amazing for me how quickly my moods can go down with this.
I have had ITP as I said for over 34 years,but I have only needed treatment in the last 10 years. I have had these symptoms of joint pain in my whole body, fatigue and depression the entire time so I know this is not related to medication I have taken or been on, it is always when my counts go down.
Tonight I am back up emotionally and I think platelet wise too.
It is great to get all of the support.
Vickie

Yep....I have the joint pain and fatigue symptoms also. They get worse when the count drops below 15k. I've taken steroids, immune suppressants, and have been on Promacta for the past 3 months....all the same to me as far as pain and fatigue go.
I actually do not worry much as long as my count is over 20k, since it's averaged around 35k for years. Bruises are an everyday normality for me. Petechiae? This past week some popped out and my right arm looked like I had measles from the elbow to fingertips! I kind of make a game of symptoms....makes dealing with things easier.
Depression? Sure....I sometimes get depressed and/or angry that there is very little I can do to control this. And I got really depressed in December when the med that was tolerable for me and had worked fine, suddenly stopped working. I also got depressed last October when I had to leave my band, just could not do the late night playing in biker bars any longer. No worries though, I've had to leave 3 bands in the past 7 years because of ITP symptoms or medication side-effects. But hey, life goes on.

Mostly, I feel bad for my wife. She does the worrying for me and puts up with all the silliness ITP entails. So last Saturday I bought her a brand new loaded Mazda 6 just to try and let her know how much I appreciate her.

Hi Vickie,

I have also been member of this excellent resource for years and years, I actually forgot about it for a while and decide to log on and create a new account today! I am really glad that I am back

I agree with you 100%, I was diagnosed when I was just three years old and it didn't take me long to associate a low count with fatigue, muscle and joint pain and depression.
I am also able to tell when my platelet count is low just by paying attention to the way my body feels. When my count is low I often say that I have trouble walking..I don't know whether it is fatigue, muscle pain..or both that causes me to feel like my legs are so heavy that I require extra effort just to put one foot infront of the other.
Many doctos over the years have told me that it is ridiculous that I should be able to 'feel' when I am low and that my symptoms are most likely not associated. Well, I beg to differ, I know I am right - and so are you.

Hi Chantalleptos,
Thank-you so much for your reply. I feel the same way with walking. Everything is such and effort. I always say my joints hurt and it feels like I have been hit by a Mac truck and then the truck has been tied to me and I am dragging it.
It is good to be validated.
Thank-you again.
Vickie

Hey I want a fully loaded Mazda!
Thank-you for your response, the only thing with me is the depression is not a controled thing it just comes over me without warning and sends me down into a deep dark hole; which is very scary. I can handle ITP. I have for over 34 years; it's just when I get hit with the depression;which I notice coincides with my counts dropping.
Take care

hi, sorry i just realised i misspelled your name!x

Hi Vickie

I wonder whether you still access this forum. I haven't in some years but decided to log back on today and found myself reading through old posts I had commented on, this led me to yours. I guess what led me to log back on was that I have been feeling those signs of fatigue, joint pain and have had that weird feeling of struggling to walk. Glad I came across this thread from that past to put a few things in perspective.

Best,
C.