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Author Topic: Thalassemia Intermedia and Gout  (Read 7837 times)
dq
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« on: March 14, 2017, 03:42:04 PM »

Hello!

It seems that Gout and Thalassemia is hardly discussed including the use of Allopurinol to control Uric Acid levels.

I'd like to hear if patients here have suffered from Gout and what they are doing to control their Uric Acid levels.

High Uric Acid levels over a period of years can be destructive to heart health and joints if not addressed.

I was wondering who have their UA levels checked regularly and who takes Allopurinol for high levels of UA?

It seems to be closely intertwined but doesn't seem to get much attention.
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gwftan
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« Reply #1 on: March 15, 2017, 09:19:32 PM »

I'm HbH and I always have a high uric acid reading without gout manisfestation yet though I had joints pain but not gouty pain.  Dr. think its side effect of always being low on hemoglobin.  My stable hb is 8-10 but the recent 6 months it has been unstable and going below 8 so much I am worried for the past 6 weeks Dr has ordered for me to go for 3 units in 6 weeks to keep my hemoglobin 9 but I don't think its maintaining at that level. I can feel it dropping.

I hope you'll find answers to your problem.
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dq
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« Reply #2 on: March 17, 2017, 02:15:35 PM »

I'm HbH and I always have a high uric acid reading without gout manisfestation yet though I had joints pain but not gouty pain.  Dr. think its side effect of always being low on hemoglobin.  My stable hb is 8-10 but the recent 6 months it has been unstable and going below 8 so much I am worried for the past 6 weeks Dr has ordered for me to go for 3 units in 6 weeks to keep my hemoglobin 9 but I don't think its maintaining at that level. I can feel it dropping.

I hope you'll find answers to your problem.

Hello gwftan, are you sure the joint pain you are feeling is just "joint pain" and not the start of gout, you should definitely get your uric acid levels checked as long term high uric acid levels will slowly manifest itself and may damage your joints and cardiovascular health. Please speak to your haematologist to monitor your uric acid levels as this may cause many issues in the future.

I had an episode of a gout attack and just hoped it wouldn't happen again until one year later when it did and the pain was absolutely horrific so I decided to listen to my haematologist and rheumatologist and start 200mgs of allopurinol once daily. I haven't heard of low haemoglobin causing joint pains before so definitely check and confirm that.

My haemoglobin has always been between 7-9 but recently it has dropped to around 6.  We are checking to see if it's because of the Keppra which I am going to stop soon or the Allopurinol or if the spleen is getting larger. I Haven't noticed anything yet but they will be watching the situation carefully over the next 6 weeks.

What are your uric acid levels?

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gwftan
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« Reply #3 on: March 21, 2017, 08:28:44 PM »

Hi Dq.

I don't think its gout.  My uric acid level is 504 u/mol on Jan 2017(my last reading) and the reading has been more or less like that for the past 15 years.  I have endometriosis as well so I think its a myriad of endometriosis symptoms as well as anaemia. I find that if I'm on low hb my joints seems to be in pain as well.  I don't like the idea of taking a lot of medication.  It seems that for the past 3 years I've been popping a lot of pills and new ones coming up.  The Dr from the gastro department has sent in some test which I haven't receive the results until my review date in May after he was asking me about the joint pain. He was suspecting something else, not gout and everytime they sent for reading, its almost the reading never say anything conclusive.  In fact no Dr told me I have gout, but the side effect of low hemoglobin. 

My hematology clinic would test my heart at least for now once a year or once in 2 years with echo or MRI(only once).  I am also getting a bit anxious about needing more blood every month.  It stresses me that I'm getting more iron into my system and with low hb its also bad for the heart. Both ways I don't know what is good really.  I'm getting another ultrasound in May.  Gastro Dr kept suspecting I have gallstones but I always gets none.  At least I would have my spleen size measured
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dq
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« Reply #4 on: June 17, 2017, 08:41:00 AM »

Gwftan, a uric acid level of 504 ummol/l is firmly in gout territory. Not everyone will develop gout so you may be on of those that high uric acid doesn't affect. I hope that is the case as gout attacks are excruciating.

Remember gout takes many many years to develop (20+) so just keep an eye on any major joint pains in your feet and constantly raise the issue with your haematologist to keep him in the loop should you experience anything. Don't let the haematologist force convince you it can only be low hg as that is not true.





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gwftan
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« Reply #5 on: August 22, 2017, 09:19:22 PM »

Thanks Dq.  I hope I'm not developing gout soon.  Having heels pain and Dr said it must be bone spur... and lots of neck pain from the degenerative disc. Fingers crossed. 
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dq
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« Reply #6 on: September 03, 2017, 07:16:02 AM »

Thanks Dq.  I hope I'm not developing gout soon.  Having heels pain and Dr said it must be bone spur... and lots of neck pain from the degenerative disc. Fingers crossed. 

Good luck mate. 
Let me know if you ever need any help with gout and how it works.
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jsbhavsar
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« Reply #7 on: October 16, 2017, 03:39:02 AM »

I was diagnosed beta thalassemia intermedia in 1994.

I was diagnosed beta thalassemia minor many times from 1995 to 2017.

I am once again diagnosed beta thalassemia intermedia due to severe complications coming up related to uric acid, spleen, liver, gall bladder, prostate and more of hemoglobin.

My joint pain problem is severe in morning between 7am and 11am. Finger joints, wrists and ankles pain. While shaving movement of neck causes discomfort.

My uric acid is always high since last 36 months. 7.49, 8.6, 9.3, 10.0, 9.3, 7.82 and so on

Febuxostat 40mg and Allapurinol 100mg did not work but it brought severe hemolysis in my body. Stopped that.

My high uric acid has no quick solution in front of me. Tried homeopathy and it has so far not helped me fully.
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dq
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« Reply #8 on: November 15, 2017, 05:03:38 PM »


My uric acid is always high since last 36 months. 7.49, 8.6, 9.3, 10.0, 9.3, 7.82 and so on

Febuxostat 40mg and Allapurinol 100mg did not work but it brought severe hemolysis in my body. Stopped that.

My high uric acid has no quick solution in front of me. Tried homeopathy and it has so far not helped me fully.

Hello jsbhavsar, hope your well.
I too have uric acid levels as yours however I only experience pain in my big toe joints.
I've been to multiple rhumatologist and had both ultrasounds and MRI scans and all rheumatologist a suggest it is gout. My haematologist said it could be pseudo gout which has similar symptoms but the rheumatologist (within the same hospital) have explained to my haematologist that this is unlikely. Anyhow when I started allopurinol I too had a serious drop in hg from 7.1-7.5 to around 5.5. My haematologist was not convinced it was allopurinol and said it was probably multi factor (inflammation and infection). In any case I stopped the allopurinol because I wanted to test myself what would happen and my hg seems to have recovered back to their correct values. Now both my rhumatologist and haematologist have recommended I start febuxostat 40mgs for 2 weeks to see if it has any impact on my over full blood counts. I have started this and I will update you when I do my next blood test at the end of the month. I am extremely worried as I too had a bad experience on allopurinol even though the doctors disagree it was the allopurinol.

Uric Acid levels as high as yours and mine will be next to impossible to control with homeopathy however you must speak to your rhumatologist or haematologist about alternatives to Allopurinol and Febuxostat. There are alternative medications. Long term high uric acid levels will make your gout worse and eventually you may end up with gouty arthritis. You also run the risk of cardiovascular damage.  Have a look at this site for more help: http://goutpal.net/forums/forum/help-my-gout/

How long did it take for you to notice the severe hemolysis after starting febuxostat and how long did it take for you to recover from it?
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jsbhavsar
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« Reply #9 on: November 16, 2017, 06:25:20 AM »

Both Febuxostat and Allapurinol have not worked for me.
What only worked was homeopathy that brought from uric acid from 10 to 9.3 to 7.82 but in return it did other complications by disturbing harmonal levels in body.

The only other allpathy drug I remember I was given in Aug 2013 to reduce uric acid level is Cochicine 0.5mg tablet.
However, I have do not remember any side effects from cochicine tablet from Aug 2013 and I have not taken it from last 4.4 yrs.

Homeopathy experts say when metabolism in body goes for a toss and organs related to metabolism misbehave one result is high uric acid wherein because of poor metabolism the body has lost its capability to digest proteins. And result of undigested protein is uric acid.
So,
if metabolism is improved (physically or medically) uric acid can come under control.

Somehow uric acid levels must fall below 6.0 which is very hard to achieve in any pathy.
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dq
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« Reply #10 on: November 16, 2017, 07:04:33 AM »

Allopurinol worked fine for me but over the 5 months I took it my haemoglobin dropped from around 7.2 to 5.5 so I stopped it myself. Again the doctors are not convinced it was the allopurinol however.
Anyway I started febuxostat a few days ago and will be taking a very low dose for the next 2 weeks to see if has a similar effect. We need to control our uric acid my friend as this is a silent but disastrous disease.

With regards to Colchicine, please be advised that this does not lower uric acid. This is just used to help relief the pain that high uric acid gout attacks cause. It is also used to help protect you from attacks when starting febuxostat or allopurinol as you may get attacks whilst uric acid crystals start to dissolve.

I would also like to explain that you don't need to take febuxostat or allopurinol for the the rest of your life. You can take it intensively for a few weeks or months a year then stop it for the rest of the year. You then do the same thing the following year. Before doing this though you need to find a rhumatologist that understands this treatment method and your condition and is prepared to work with you on it.
Bare in mind you may need to be on it slightly longer the first time you start this method to dissolve all built up crystals.

Anyway good luck mate.
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jsbhavsar
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« Reply #11 on: November 16, 2017, 07:18:30 AM »

1)
My Febuxostat treatment was written this way:

Febuxostat 40mg 1 x 1 for 1 month

After 1 month:
Febuxostat 40mg 0 x 1 for 1 month

My RBC system broke down by 16th or 17th day only of the first treatment. Hematologist asked me to stop it.

2)
After stopping Febuxostat 40mg, I was asked to take Allapurinol 100mg 1 x 1 x 1
This brought worst of my health within 10-11 days

I see no one getting off on Febuxostat or Allapurinol. I have one colleague taking daily 1 Febuxostat 40mg daily for quite sometime now.

My very childhood doctor of 1980s has been taking Allapurinol 300mg and his kidney is on the verge of replacement now. Uric acid continues to remain high.

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