itp, depresson, tired an fatigue

[shanty242]

 had i.t.p since I was 14 year old they try everything from bone marrow, the wanted to remove my spleen but am scared, depression killing me

[SoporRose]

Dear Shanty,

I am so sorry to read about what you are enduring! When you keep having to try medications and going through painful procedures to no effect, of course you'll be depressed. Do you have a good therapist? Mine has been a life-saver. And there are many good people here who will offer you support and sympathy. Please try to hang in there and tell us more about through what you are going. Others more knowledgeable than I am may well have some valuable insights that might help you

Ruth

[Ali48]

Hi Shanty do you bleed?

[tayloreat]

Hi,

I can understand how you feel and I'm sure it has been a long road for you. My suggestion is to ask God to continue to give you strength. Seek his face and let Him do the rest to heal your body. What I have learned is that our mentality state does affect our physical. Stay positive as much as possible and try not to focus on your condition.

God Bless!!

[Rockette62]

Shanty,

 We understand the fear and fatigue. The treatment can be very unpleasant and distressing. Ask for treatment for your depression. If you are already on treatment for depression you may need to try something else as it doesnt seem to be helping. Removing your spleen may not help. In Australia only about 60% - 70% of people who have their spleen removed get long term benefit. It is not a cure. The spleen is also very important to your health so keep it as long as you can.

Where do you live? Can you use internet often. Find out as much as you can about the ITP and Depression. You will be surprised how much knowing about your conditions can help.

Best wishes Dawn

[crissy22a]

Oh you poor thing . Please listen. Go to the doctors and get Duloxitine, it saved my life. I was so low. It stopped the fatigue, depression pain  in my joints , everything.

Good luck

[crissy22a]

Also dont have your spleen removed, it doesn't work. N,plate , has been the only medication that has worked for me. can you get this treatment.

[NickyD]

What  treatments have you tried?  I have had a splenectomy and it did not work.

[hassell83]

Shanty: I have had this since 2009, where my count was 2. They suggested having the spleen out.  If I had to do it over again, I would not have it out. It hasn`t made my count any better. Mine goes up and down like a yo yo. I have been on Revolade for the last 2 years and they have been at ti mes real high, then goes back down.  In the last year , the count hasn`t gone down to 2 anymore.  God Bless, Val

[takari]

Before even considering getting your spleen removed, get an indium nuclear scan. It will tell you where your platelets are being destroyed. It won't tell you if splenectomy will work, but it can tell you if it won't work and that's important. For me it won't work so no taking my spleen. If they tell you that you can't have it, find another doctor. I was told you can't get this test in the US but I had it done in Syracuse, NY. I have great doctors. Serotonin is carried on platelets and yours are not normal platelets so all that stuff that makes you happy is not traveling the way it should and depression is common. Get help with that, it's available. And, there are so many great drugs out there. I am on promacta and doing well. I failed totally on prednisone and IVIG before this.

[Hidden]

Hi Shanty

Depression is a terrible thing as many of us on this site can agree with, please try to see your doctor to see if they can prescribe something to help you for a while. I was able to speak to my haematologist about removing my spleen, we agreed that in my case it was unlikely to help and have since been through all the different treatments and tests mentioned on this site.  I am presently on Nplate and although my platelet count is permanently low, it is at least fairly stable.  Keep yourself informed by visiting this site often, it makes a real difference to know you are not alone with ITP.

[Ethelbenny]

Hi my son was also diagnosed at 14, none of the meds worked, he also suffered from depression (platelets carry serotonin) it is not uncommon. He started nplate at 16 after his splenectomy failed to raise gis platelets. He is 19 now and has not had any treatment since June of last year. He has maintained around 50 but last month came back at 120 the highest he has been without treatment since he was diagnosed 

[Milane]

I also have itp for many years & discovered that I am also allergic to juniper/cedar trees. Plus, I develop a kneecap arthritis from long term use of prednisone. I eventually refused to take any Medication when I almost lost my legs. Changed my doctors & found one that is willing to find ways to manage my itp. I'm doing well, taking doxepin (the lowest mg I can get) on a need basis since according to doc, stress triggers our auto immune. just be careful for signs of suicidal thoughts. doc consider it high risk so He gives me early prevention like flu shot, allergy spray like Flonase or doxepin for hives & stress, use of mask since we are susceptible to illness even from someone just having a cold near you, dissenfect surroundings especially at work, etc. this time, I'm developing low iron, vit d deficiency, etc with itp. As doctor suggested, I'm managing these by eating natural foods (avoid blood thinner foods/medicines but eat a lot of really green leafy vegetables equal vit k to help with the clotting), early morning sunrise for vit D & the most that help is the vitamin b12 injection shots I get twice or three times a month. I noticed that the b-12 somehow help with the pain from arthritis & provided a boost of energy. it also maintained my itp above 50 k. I just ordered the b12 patch from a company vita science to try this week. the review looks great & many described that it appears to work similar to the injection shots. not a lot recommended the tablets or capsule so don't try it. 

For those who are trying to have a baby, previous doc says it's safe but I didn't want to take a chance giving my baby health issues from prednisone. However, during delivery... the doc will not administer epidural if your platelets is low but safe to deliver so long you are over 50 k. just endure the pain of natural delivery. Then prednisone or other treatment will be administered after the delivery depending how low your platelets is. there is a specialist on standby. the pediatric doc will monitor the baby for platelets too since the baby will temporarily experienced it. I only felt sorry since doc need to poke the baby with needle for blood test. in my case just 3 days while I was at the hospital then a couple of times more after a week or two and baby seems to show no continuous sign of itp. now, he will be 9 years old next week and still no sign of itp. 

Hope this helps.

[Milane]

ask your doctor for b12 injections or patch. it will improve your mood. tablet or capsule is not effective. 

[Seafood]

Yep itp is depressing and anxiety sucks