
Enlarged heart because I haven't been taking bp meds because they caused gout.
#1
Posted 14 August 2017 - 08:12 PM
Has this happened to anyone, I guess I'll have to start taking gout meds too.
#2
Posted 15 August 2017 - 10:59 AM
Janis - I'm so sorry about your troubles. We go along pretty steadily, in an OK groove, and then something happens. It all comes flooding back - anxiety, worry, and fear. But if you are in the hands of a competent cardiologist, I know you will find another BP med that works, and he'll stay on top of the heart enlargement.
I hesitate to overstep boundaries here or get into a Right Coast/Left Coast melee, but are you sure that all your medical team knows about the various supplements you take? Dietary supplements are not regulated and so there is no guarantee that there isn't something else in them that might complicate blood pressure, gout, or even heart issues. I wonder if you experimented with cutting them all out if it wouldn't clarify the medical picture. Please, please forgive my unsolicited advice. Not lecturing an intelligent adult!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#3
Posted 15 August 2017 - 12:15 PM
#4
Posted 15 August 2017 - 05:23 PM
Swimming can't be bad! I hope you get some reassurance soon on all the troubles.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#5
Posted 15 August 2017 - 06:54 PM
http://www.webmd.com...s/tc/gout-cause
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#6
Posted 15 August 2017 - 09:13 PM
My uric acid is elevated - they never called it gout but gout is elevated uric acid. I think it is a side effect of my transplanted kidney. I take Allopurinol 100 mg. twice a day. There is also a newer brand name med called Uloric.
I take a number of BP meds. I used to take lisinopril but it gave me a constant cough.
Of all the meds I have taken Allopurinol was the least bothersome - no noticeable side effects at all.
Hope they figure things out for you.
#7
Posted 16 August 2017 - 07:57 PM
I've got the cough but that's the least of my problems.
#8
Posted 16 August 2017 - 08:32 PM
#9
Posted 17 August 2017 - 11:55 AM
Janis - Glad to know you've ID'd the culprit.
Both our coasts get blamed for everything . . . but I'm proud of them. Mostly!
I have to take prescribed Vitamin D (hyperparathyroidism caused by renal insufficiency caused by Gleevec) and I've been told by the nephrologist that you have to keep an eye on protein levels in the peripheral blood at dosages as high as you report taking. As long as that number is OK then you're OK, but it does seem like an awful lot to take each day. I am prescribed 2000 3 X week.
But mostly I was concerned about the other supplements in your regimen. Is your doc OK with the teas, milk thistle and turmeric?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#10
Posted 17 August 2017 - 12:29 PM
It is important to check your vitamin D level (I test twice a year) when taking vitamin D3 supplements - especially in the high dose Janis is taking. 10,000 IU's can be too much if you are not starting from a low level or are never in the sun. Extra high vitamin D in the blood is just as bad as too little. The sweet spot is between 50-70 ng /ml. I tend to keep mine at 70 ng/ml. Over 100 ng/ml is generally considered too high. I only take 10,000 IU's every other day alternating with 5,000 IU's in the wintertime when there is little to no sun exposure on my skin. During the summer I take 5,000 IU's - but only after learning what it takes to keep my blood level where I want it. Each person is different, so testing is important to know what works for you.
I do take vitamin D3 with vitamin K2 with food (fat soluble). The two vitamins work together and good levels of K2 guard against overdosing on D3. It is a good idea to only take vitamin supplements if you have a known deficiency. I follow the chart below because I have CML. I have kept my blood level in the 70ng/ml range since 2013 and have avoided all colds, flu and bronchial infections since that time. It's important to note that there is no consensus on an ideal vitamin D blood level. Scientific journals have the level between 30-50 ng/ml. Recommended daily intake is no more than 1000-2000 IU's per day. Those levels did not work for me, so I increased and follow the articles and chart below.
(http://articles.merc...n-d-levels.aspx) chart citation
https://www.ncbi.nlm...les/PMC3166406/
https://www.ncbi.nlm...les/PMC3684798/
http://www.webmd.com...anced-cancers#1
https://www.youtube....eature=youtu.be
https://riordanclini...he-dynamic-duo/
Finally: Vitamin D is not a cure for anything. It is a vital nutrient that helps your body function. Proper levels of vitamin D "may" prevent a disease from occurring or an existing disease from advancing. There is evidence for this - but no conclusive proof.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
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