Hi All. I'm a 52yo male who developed illeal Crohn's 30 years ago. I also have oral Crohns and psoriatic arthritis. My conditions were all moderate to severe before medication, and reasonably refractory to mild treatments like mesalamine. The one blessing is that my Crohns has never been fistulizing.
I'm in very good shape these days - largely free of symptoms - and I'm a strong and athletic 220 lbs. I've never required a resection.
So, here is what I think I've learned over the years.
(1). Be aggressive with the medications and, if possible, get the symptoms under control and keep them there.
With the meds, less is not more. On top of the diurnal misery, the negative effects of uncontrolled inflammation are very serious. Yes, the biologics like Humira may pose some long-term risk of lymphoma. But active ileitis and coltis pose even greater cancer risk. The metabolic consequences of inflammation are pretty deadly - insulin resistance, atherosclerosis, and on and on.
I'm on Humira + MTX now. Over the years I've used Enbrel, cyclosporine, 6mp, mycophenylate mofetil, Cimzia, etc. I have found that the mix of a mAB (like Humira) with an anti-metabolite (like 6mp) plus short cycles of Cipro works best. I have not tried Stelara.
(2). It is important to stay ahead of the curve and treat opportunistic infections aggressively when you are on immunosuppressive drugs. My doctor lets me keep a supply of Cipro or Zpaks handy for quick treatment of infections that look bacterial. I tend to get bacterial URI's. Get your flu vaccines every year too.
(3). Hormones matter. My doctor had me try testosterone replacement therapy because my test was borderline low. The improvement in mood and libido was expected. What I didn't expect was a big improvement in my Crohns symptoms, especially reduced oral ulceration, and in my arthritis. Seeing the results my doctor pressed the dosages higher to see how I responded. He also had me try nandrolone, which is a tweaked testosterone with some anti-inflammatory properties. Nandrolone is the bomb, and 200mg/week basically put me in near remission (oral and arthritic symptoms are perfect, illeal symptoms are 80-90%). So I have Rx's for testosterone 200mg / week, nandrolone 200mg / week, and some anti-oestrogens to keep oestradiol under control. These are big dosages but my results and blood tests are great. I've been able to reduce my dosing of Humira and MTX (in half) with no problems.
I did a little research and found that there have been some intriguing research findings about the interactions between MTX and androgens. The combo apparently potently inhibits macrophage activation in vitro.
If you are a guy who is interested in this stuff, the a good way to proceed is to get a GP who treats a lot of HIV patients. My GP in downtown NY happened to treat a fair number of these patients and so knew what to do with the wasting, midsection fat, etc. in Crohns. The next best choice is to go to a men's health / andrology clinic like NYU's.
(4). People with Crohns tend to develop excess amounts of metabolically active visceral fat. The fat produces inflammatory cytokines like TNF-a, as well as aromatase which increases oestrogen, leading to fat deposition, water retention, and other problems. Visceral fat is also associated with insulin resistance (pre-diabetes). One sign of insulin resistance is getting v sleepy after eating carbs.
There are several ways to address this.
- exercise
- controlling the disease thru medication
- taking testosterone, suppressing oestrogen
Oxandrolone has been used to reduce trunkal fat, but this drug is pretty liver toxic and is therefore off-limits for someone on MTX. HGH has been used for this fat, but is expensive and tend to worsen insulin resistance.
The answer may be Metformin, a common drug for type 2 diabetes. It reduces visceral fat and insulin resistance. It is very safe with minor negative side effects. I take metformin 500mg twice a day.
(5). Go live your life even if you are not feeling perfect. You are not alone - lots of people feel crappy for one reason or another, and being engaged takes your mind off the discomforts.
I hope my experience and observations will be useful to others. To recap
- do not undermedicate! Combo therapy works well.
- if you are a guy, you may benefit from getting your testosterone levels up to the top of the normal range or even higher
- nandrolone works great at reducing inflammation and preserving lean body mass, esp. together with MTX
- keep your oestradiol E3 down to about 20
- get lean, strong and fit via exercise, good food, hormone balance, and maybe metformin (if you have IR or excess trunkal fat).
Take care!
I'm in very good shape these days - largely free of symptoms - and I'm a strong and athletic 220 lbs. I've never required a resection.
So, here is what I think I've learned over the years.
(1). Be aggressive with the medications and, if possible, get the symptoms under control and keep them there.
With the meds, less is not more. On top of the diurnal misery, the negative effects of uncontrolled inflammation are very serious. Yes, the biologics like Humira may pose some long-term risk of lymphoma. But active ileitis and coltis pose even greater cancer risk. The metabolic consequences of inflammation are pretty deadly - insulin resistance, atherosclerosis, and on and on.
I'm on Humira + MTX now. Over the years I've used Enbrel, cyclosporine, 6mp, mycophenylate mofetil, Cimzia, etc. I have found that the mix of a mAB (like Humira) with an anti-metabolite (like 6mp) plus short cycles of Cipro works best. I have not tried Stelara.
(2). It is important to stay ahead of the curve and treat opportunistic infections aggressively when you are on immunosuppressive drugs. My doctor lets me keep a supply of Cipro or Zpaks handy for quick treatment of infections that look bacterial. I tend to get bacterial URI's. Get your flu vaccines every year too.
(3). Hormones matter. My doctor had me try testosterone replacement therapy because my test was borderline low. The improvement in mood and libido was expected. What I didn't expect was a big improvement in my Crohns symptoms, especially reduced oral ulceration, and in my arthritis. Seeing the results my doctor pressed the dosages higher to see how I responded. He also had me try nandrolone, which is a tweaked testosterone with some anti-inflammatory properties. Nandrolone is the bomb, and 200mg/week basically put me in near remission (oral and arthritic symptoms are perfect, illeal symptoms are 80-90%). So I have Rx's for testosterone 200mg / week, nandrolone 200mg / week, and some anti-oestrogens to keep oestradiol under control. These are big dosages but my results and blood tests are great. I've been able to reduce my dosing of Humira and MTX (in half) with no problems.
I did a little research and found that there have been some intriguing research findings about the interactions between MTX and androgens. The combo apparently potently inhibits macrophage activation in vitro.
If you are a guy who is interested in this stuff, the a good way to proceed is to get a GP who treats a lot of HIV patients. My GP in downtown NY happened to treat a fair number of these patients and so knew what to do with the wasting, midsection fat, etc. in Crohns. The next best choice is to go to a men's health / andrology clinic like NYU's.
(4). People with Crohns tend to develop excess amounts of metabolically active visceral fat. The fat produces inflammatory cytokines like TNF-a, as well as aromatase which increases oestrogen, leading to fat deposition, water retention, and other problems. Visceral fat is also associated with insulin resistance (pre-diabetes). One sign of insulin resistance is getting v sleepy after eating carbs.
There are several ways to address this.
- exercise
- controlling the disease thru medication
- taking testosterone, suppressing oestrogen
Oxandrolone has been used to reduce trunkal fat, but this drug is pretty liver toxic and is therefore off-limits for someone on MTX. HGH has been used for this fat, but is expensive and tend to worsen insulin resistance.
The answer may be Metformin, a common drug for type 2 diabetes. It reduces visceral fat and insulin resistance. It is very safe with minor negative side effects. I take metformin 500mg twice a day.
(5). Go live your life even if you are not feeling perfect. You are not alone - lots of people feel crappy for one reason or another, and being engaged takes your mind off the discomforts.
I hope my experience and observations will be useful to others. To recap
- do not undermedicate! Combo therapy works well.
- if you are a guy, you may benefit from getting your testosterone levels up to the top of the normal range or even higher
- nandrolone works great at reducing inflammation and preserving lean body mass, esp. together with MTX
- keep your oestradiol E3 down to about 20
- get lean, strong and fit via exercise, good food, hormone balance, and maybe metformin (if you have IR or excess trunkal fat).
Take care!