I need you advice on medications

[Jonas]

Hi everyone,

I need your advice on what to do.
My situation is this, I don't have any D but I'm pretty sure that my intestines are inflamed, and that I am far from remission.
It all started a year ago (after the MC diagnosis), with shoulder pain, later pain in the foot.

Now I have a lot of pain in my body, mostly in the hip and back, but also still in the foot and shoulder. I feel handicapped when I cannot move as usual, cannot sit down, etc..
And the symptoms keeps adding on, and I can no longer feel a part of my leg, my foot gets real hot then cool again seconds later without any reason.
I also have hard time sleeping because of it and I can't work. This has lasted for 4 months and my doctors seems to have given up, and I'm in a dark place and thinking that this is it.

I have ordered and sent the enterolab test, and believe I will have the result in 2-3 week’s time.
I'm on a very simple diet, and are GF, DF, SF, EF and stay away from corn, fruit, vegetables, nuts and other things.
After I get the results, I will hopefully know what is safe to start with.

What are my options? What would you do if you were in my place?
The pain and new symptoms is the number one priority I feel that if I just can get a little better and not worse it would mean a lot mentally.

I have never been on Entocort, is that an option? Can it help?
If so should a start on 9mg even do I don't have any D?

Or is mesalamine an option or is there any other medication that is worth a try?

I'm very depressed and stressed out about the whole situation. Do I make it too hard on myself not taking wellbutrin or Lorezepam (ativan) in this difficult time, when I probably need it the most?

Any advice big or small is very much appreciated.

/Jonas

[JLH]

Do a Potty People search for vitamins and minerals. Use Tex's name in the lower search bar. You should find sublingual Vit. B-12, Vit. D3, magnesium and more.

EnteroLab results should be helpful.

Hang in there.

I'm sure Tex will be along to help.

[brandy]

Hi Jonas,

Have your doctors checked you for ankylosing spondylitis? It is an auto immune arthritis that effects hips and lower backs as well as other areas of the body. I believe we have one male member that has been diagnosed with ankylosing spondylitis and is getting treatment for it. I'm not a medical person but with the severe level of pain that you have going on I'd ask your doctors about it. Maybe Joe will see this post and can chime in. http://www.mayoclinic.com/health/ankylo ... is/DS00483. It appears there can be some kind of interaction with the gut.

I'm not sure about a steroid's (entocort) efficacy on joint pain. Maybe someone (like Tex) who knows more about how steroids work can chime in.

Saw your other post and I'm sorry you are still suffering. I've not taken Wellbutrin but have taken 1/4 pill of the lowest dose of Lorazipam (Ativan) several times a year on a full stomach. I'm 140 lb woman and anything more than a 1/4 pill puts me to sleep. Please note that Ativan is a product you have to taper off of if you use it regularly, i.e. it is addicting. I take it several times a year. Wellbutrim seems to be safe for us but I've never used it.

Keep us posted and perhaps some others will have some thoughts.

Brandy

[brandy]

Hi Jonas,

I'm hoping some of the wellbutrin users will chime in. Pre MC I took Lorazipam (Ativan) for about a 4 month period due to a divorce. If I took a 1/2 of the lowest dose in the evening it would make me sleep really well and I'd be "relaxed" the next day. I'm just not sure if I'd be able to tolerate it for a 3 or 4 month stretch now. Wellbutrim my be safer for the gut.

Brandy

[UkuleleLady]

Hi Jonas,

I think you are being too hard on yourself, and I am concerned about your mental state. I'm sorry that your elimination diet hasn't resolved your symptoms. Did you order the extended food panel from enterolab? I wonder if rice or something else seemingly benign could be making you ill. Rice is a huge trigger for me.

There is no shame in taking something for anxiety or depression. Nor is there any shame in taking steroids if your body is spiraling out of control. Whether these things will help you or hurt you, however, I wish I knew.

I'm praying that you get a treatable diagnosis. Don't give up. I know how hard it is to advocate for yourself in the medical system. I have no idea what that is like in Sweden but its awful in the US.

Keep fighting. Treat your anxiety if that is affecting you. It's hard on your gut as well.

Hugs,
Nancy

[tex]

Hi Jonas,

This sentence caught my eye:

And the symptoms keeps adding on, and I can no longer feel a part of my leg, my foot gets real hot then cool again seconds later without any reason.

It caught my eye because I have experienced that sequence of symptoms, and in my case it apparently was due to a combination of a B-12 deficiency and peripheral neuropathy caused by years of untreated gluten sensitivity. Taking sublingual B-12 with folic acid resolved those symptoms. Have any of your doctors checked your vitamin B-12 level and your folate level? Our body cannot utilize vitamin B-12 unless it has sufficient folic acid. Many of us here on this board are low on vitamin B-12, unless we are taking a supplement.

Sometimes a vitamin B-12 deficiency will present as tingling/numbness of an area of skin, anywhere on the body, sometimes it will present as perceived temperature excursions (especially involving the feet), and sometimes it can present as involuntary muscle spasms or "tics". And it can definitely cause joint pain in some cases. It can even lead to problems such as deep depression, paranoia and delusions, memory loss, incontinence, loss of taste and smell, shortness of breath, and various other symptoms.

If I were in your situation, I would either immediately start taking a vitamin B-12 and folic acid supplement, to see if it helps, or I would rule out a deficiency by medical testing. As long as your kidneys are working normally, it's impossible to overdose on vitamin B-12, so it's safe to take.

Regarding Entocort (budesonide), don't take it to treat MC if you do not have D, because it will cause constipation. Corticosteroids are often used to resolve back or joint pain, but that would call for either a local treatment, or a systemic corticosteroid (not budesonide).

Mesalamine might help to reduce some of the inflammation in your intestines, as long as it doesn't cause any adverse side effects. Do you know if your RF (rheumatoid factor) has been checked? If it's positive, sulfasalazine might be an option, provided that you can tolerate sulfa drugs. But if I were your doctor, before I would consider prescribing any anti-inflammatory medications, I would definitely check out your vitamin B-12 status.

Tex

[Jonas]

Thank you for all your answers, it really means a lot.

I have done many blood tests and all have showed normal RA-factor and no sign that I have an inflammation in my body. I have seen a rheumatologist and taken more tests, but he did not think that I had arthritis. I have also done a MR-scan of my back that did not show any signs, so at the moment they don’t think it is (AS).

But I’m pretty sure that I have an inflammation in my hip and back, that’s not visible on the blood tests. Much like the MC and Psoriasis is not visible on the blood tests. Can that be so?

Prior to the hip and back pain 4 months ago, there was a lot of stress in my life. I’m thinking that all that stress in combination with that MC was not in remission started a small pain in the hip.
Then ad that I went on antibiotics for 14days, the pain got worse and the stress was at peak level. Since then the stress level has been at the peak. Maybe that would qualify as a very leaky gut? Could this be part of the problem?

I have ordered test A and C at enterolab.

The blood tests that I took states that my B-12 levels are high (580) and that my folate levels are normal.

Regarding supplements, I do take D-vitamin 5000ug, Calcium, magnesium and zink.

My mother is also on wellbutrin since both her parents (my grandparents) passed away this summer. And it has helped her a lot.

I guess that it would probably help me more to take wellbutrin (or Ativan) than Entocort? Since if I feel better mentally it would benefit the healing of intestines with less stress. Don’t you agree?

Once again, thank you. I don’t know what I would do without you help.

/Jonas

[mzh]

Could you have something entirely unrelated, like a tick disease?

[Jonas]

I don't know much about tick disease, but do that not move around? I have had hip pain for 4 months.

[Joefnh]

Hi Jonas, I noted Brandy's note calling attention to my AS. Certainly it sounds like you are dealing with some level of neurological pain and it sounds similar to what I have dealt with.

As a very quick summary I apparently developed MC (CC) and Crohns for a while until getting diagnosed and treated a couple of years later with initially Entocort, learning about avoiding gluten and other foods that I am sensitive to, and then Imuran as a long term steroid sparing immune suppressant. About the time I was getting the MC under control with diet and meds I was also diagnosed with Anklyosing Spondylitis (AS) which is an autoimmune condition affecting the bones in the spine. Over this time I had a couple of surgeries to remove parts of my small intestines and large intestines to correct for damage that had been occurring for quite a while before my diagnosis and me changing my diet.

Recently in the past year I have been diagnosed with a autoimmune form of muscular dystrophy called Myasthenia Gravis (MG) which affects my ability to walk, breathe and swallow. It basically weakens all of my muscles. For me it takes being very faithful to a GF, DF and SF diet and taking immune suppressants to keep all of these conditions under control. I also have had testing that looks for other foods I am sensitive to and I avoid those as well.

Overall with the AS I have experienced very similar pains that you are describing, but you have had a MRI which is a very sensitive scan that will detect any inflammation of the spine and will also look for spinal stenosis which is where the spinal canal swells and constricts the passage of your spinal cord causing pain, numbness or other neurological symptoms.

I think Tex is right on target in looking at neurological issues related to certain vitamins and minerals. When put GI system in inflamed, it does not absorb the minerals and vitamins it should and we suffer teh consequences. Like you I have to take a high dose of vitamin D and I also take a high dose of vitamin B compounds to helps overcome the absorption issues that the long term GI damage has done.

Jonas have you had other inflammatory tests done? You mentioned RA factor, how about a S3d rate or sedimentation rate test or a C-reactive protein test. There are a few test test that look for different types of inflammation. Since it seems that bone related inflammation is not the issue I would focus on muscle or nerve related inflammation, both of which can be quite painful. Tex has some great resources for some good supplements for nerve related pain.

I'm so sorry your going through this, please keep us updated and feel free to ask any questions Jonas

[mzh]

Tick diseases have so many different symptoms it's hard to say whether it moves around or not. Many times vision comes and goes or it can be in joint synovial fluid and it's even been found in gallbladders and other organs! Of course the docs don't read the reports stating this. Frustrating.

[Gabes-Apg]

In Australia, our medical system does not acknowledge that Lyme (tick) disease exist,
Albeit, there are doctors and practitioners who are smart (couragous) enough to acknowledge that they do exist...
I hope you get some insight, clarity to the root cause of the symptoms.

[Jonas]

Joe I’m very sorry to hear about the MG diagnosis, seem to be a hard one to accept and live with.
Hope you feel better and are making some progress.
I will ask my doctor about the S3d rate or sedimentation rate test or a C-reactive protein test.

My father has AS (Bechterews), so I asked the rheumatologist specially about that. But I was sent home and he told my doctor that he did not find anything indicating arthritis or AS.
After the MR-scan when they did not find anything I has put on prednisolone, 60mg/day 1, 50mg/day 2 and so on for 6 days, and nothing happened (except that I could not sleep for the first nights) but the pain in the hip remained. If it was AS should I not have felt a little better?

My symtoms/pain always come after I have used the muscle, for example if I use my biceps in training, I will get a pain in the muscle hold the day after. Most of us get a soreness in the muscle, but my pain in my muscle hold will not go away. Is it well inflamed then it will stay that way, the same goes for my hip and back pain. My back pain much got worse after all the back exercises my physiotherapist gave me.
Can anyone relate to that, ever heard of that or am I a strange case?

What kind of doctor do I need to see? I have been to neurologist and am going to see them again in a weeks’ time since a part of my leg is a sleep all the time. The rheumatologist will probably not see me again in the near future.
I have never been to a GI doctor is that an option? Or someone else?

Regarding Lyme disease, I don’t have any swollen joints or anything else visible on the outside (except 15% weight loss). Are not swollen joints one of the key symptoms for lyme disease, or can I still have it without swollen joints?

What if any do you treat someone with MC that does not have D? Since Entocort is not an option.

Sorry for the long post and all the questions.

[mzh]

As I mentioned in a previous post, it's not always manifested with swollen joints. I had a dog with Lyme and his main symptoms were an erratic heartbeat and feeling very tired. When he was treated with amoxicillin - he couldn't tolerate prednisone - his heartbeat became normal again.

The Lyme spirochete eventually settled in his spleen and it had to come out. Boy, after he recovered he was like a normal active youngster again. He was about 8 when the spleen came out.

[tex]

What kind of doctor do I need to see? I have been to neurologist and am going to see them again in a weeks’ time since a part of my leg is a sleep all the time.

Both the lack of response to prednisolone, and the parthesia (numbness) are markers of a neurological issue, so it's pretty clear to me (again, I'm not a doctor) that the cause of your pain is a neurological disorder of some type.

I have been taking a prescription vitamin mix of the active forms of vitamins B-12, B-9, and B-6 for over 4 years now, because of neurological damage caused by years of untreated gluten sensitivity. The product was developed to treat diabetics who have developed peripheral neuropathy, and it's called Metanx. The normal labeled dose is 1 or 2 capsules per day. I take one capsule each day, and here is what each capsule contains:

3 mg of L-methylfolate Calcium

35 mg of Pyridoxal 5?-phosphate

2 mg of Methylcobalamin

Those are milligrams, not micrograms, so these are relatively high doses, considering that I have been taking it every day for so many years. But my symptoms are much better than they were originally.

I think it's worth noting that even though my vitamin B-12 blood level is at the very top of the so-called normal range, if I stop taking it for a few days, I can detect a decline in my balance, and I tend to have an increase in occasional paresthesia in my hands and arms, especially. IOW, I am no longer "normal" because of the gluten damage that I sustained, and since I'm not normal, "normal" medical descriptions or ranges no longer apply, despite doctor's claims to the contrary.

That said, I'm not sure that methylcobalamin (and/or any of the other vitamins listed) would help to relieve your pain, since pain was not a major part of my problems. But it might help, and it sure couldn't hurt (unless your kidneys are not functioning normally).

Treating MC when D is not part of the symptoms list, is virtually always best done by diet changes alone, IMO. You will have much better information available for making diet choices, when you receive your EnteroLab test results. There really aren't any suitable medication options available for treating MC without D. Even mesalamine can cause constipation, for some people.

Tex