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Posted 12/24/2010 3:37 AM (GMT 0)
I am sorry to post again...just really am so frustrated . I will try and keep this short..my joint and muscle pain is constant and severe. They have upped my remicade and nothing yet. They can't find a pain pill that works for my joint pain. Today two things happened. One, found out I have a vitamin d deficiency. It was 11. He wants me to take 50000 units for 8 weeks, then 2000 daily. Unfortunately, he thought I could get it at the pharmacy and left for the holiday so I can't start until Monday. Second, my gi called in a rx for celebrex but my insurance company won't approve it until monday due to the holiday.

Frustration doesn't even begin to describe what I am feeling...can anyone help me with any direction...does any of this make sense? I am sorry..I am just so tired...
Posted 12/24/2010 4:33 AM (GMT 0)
Oh, June. That's really hard. I'm so sorry you're in this much pain... and at Christmas too!

If you can afford it, it's possible to get vitamin D capsules OTC (or at leastyou can here). They're a lower, daily, dose, but that might help tide you over until Monday.

I had the Vit D joint pain recently - ow! I feel for you.

Ivy.
Posted 12/24/2010 5:59 AM (GMT 0)
Wow that really stinks! I like Ivy's idea to get started with a normal dose of Vitamin D. I take 1,000 in the morning and again at bedtime. I am wishing you well. 11 is a lucky number they say and I am hoping that 2011 will bring you relief and luck. Guy
Posted 12/24/2010 1:53 PM (GMT 0)
At GNC you can get Vitamin D pills that are 5000 IU. I take them. I don't remember how much they cost, but if they were out of this world expensive I know I would remember. At least you could get started on something. Also I would be careful with the Celebrex. My Rhuemy wouldn't let me take that because it could cause GI bleeding like NSAIDs. I am surprised your GI scripted you this. Just make sure you take it with food so it isn't sitting in your empty stomach.
Posted 12/24/2010 3:36 PM (GMT 0)
Yes Vitamin D3 is a very inexpensive vitamin. I agree go to your local drug store and start at least the over the counter Vitamin D3. I started taking Vitamin D because of chronic pain, and although it hasn't taken it all away, it has helped alot. It does take a few weeks to notice the difference, it took me about 2-3 weeks to notice. Good luck!
Posted 12/24/2010 3:39 PM (GMT 0)
June I forget what did they say with the ANA test?

For emergencies I use tordidal (sp?) shots, but it can cause gi bleeding.

Please never worry about posting, especially when you are feeling bad!

I think raise D has helped me, but it is not 100%.

 

Posted 12/24/2010 4:43 PM (GMT 0)
Hope things are a little better today, Merry Christmas.
Posted 12/25/2010 4:54 AM (GMT 0)
I think the vitamin D will help a lot. I have a question about the celebrex - isn't that an NSAID? Should you be taking an NSAID? I know you said your doc prescribed it, but maybe there's a better way to control the pain? I'm just worried that the NSAID will make the crohn's worse.

Have you see a rheumatologist? If you haven't, I think you ought to. I know your sig says you've tried MTX, but have you tried MTX in conjunction with Remicade? Or maybe something like sulfasalazine? I think a rheumy will be able to assist you there. Also, as navy asked, have they done any testing for lupus (ana), and drug induced lupus (anti-ds dna), and also for RA (anti-ccp I think).

I hope you feel better June. I hope you are able to have a fun holiday. I hope with the new year, you'll be free of pain, and loving life.

((Hugs))
PV
Posted 12/25/2010 2:46 PM (GMT 0)
hi everyone..

I had my ana tested... it was fine.

You have me really wondering about the celebrex now..

not feeling too good today..taking the tramadol and makes me feel awful but helps the joint pain...I am going to try and find a rheumy this week. The MTX gave me so many side effects including swelling my eyes and face and hallucinations..it was getting really bad which is why I was pulled off of it. This has been my issue this entire time... not handling the meds.

thank you all.. I wish the same for everyone....hugs.
Posted 12/25/2010 8:06 PM (GMT 0)
I take 50000 units a week too. I have been on them for 2 months now and have a blood test in 3 weeks to see if my count has come up from 12. I don't see where they are making much of a difference. My isnurance won't pay for it as they claim it is over the counter...If it's over the counter, why do we need a perscription for it? It costs me about $14 for 4 pills. one thing you can do is contact a vitamin company to see if they can help you out. Worst they can say is no.
Posted 12/25/2010 11:50 PM (GMT 0)
June,

I don't really have advice as I have not experience the joint pain but I am so sorry you are going through this. I am praying the medicine works for you and you start feeling better.

Posted 12/28/2010 1:21 AM (GMT 0)
so my hubby brought home my vitamin d this evening so I guess I will start in the morning..costs 11.99 for 4 pills. Our insurance didn't cover it either.

I keep reading that crohn's patients with poor quality of life have very low vitamin d... I can't help but question why I wasn't tested months ago... I have been declining and not making any progress... is this my reason?

Put a call into my GI to question his use of the celebrex but of course he is out of office.. I am still using the tramadol.. =(
I want something to work. anything.
Posted 12/28/2010 1:42 AM (GMT 0)
Thirty years with this DD and they never test mine until I asked them to do it about three months ago. Mine was normal but I have been taking 2000 iu of vita D for a while now.

Hoping 2011 will be a good one for you.
Guy
Posted 12/28/2010 1:53 AM (GMT 0)
Thanks Guy!! Wishing the same for you.
Posted 12/28/2010 3:57 AM (GMT 0)
June, I can't believe they didn't test your Vit. D in the beginning. This may be an opportunity to have a conversation with your GI team (HELLO MAYO) about other nutritional issues, like folic acid and B12.

I take 1000 iu/twice daily also and the whole bottle of 200 pills doesn't cost very much. What was so expensive about your 4 pills? Are they the ginormous dose taken once per week? Maybe you can calculate the price per iu (mg, I think!).
Posted 12/28/2010 4:08 AM (GMT 0)
Kaz, I definitely am going to speak to the Mayo about this.. They did test my B12 , iron and folic acid but never my vitamin D.

Yes.. it is 50,000 once per week for 8 weeks. At that point I am being reduced to 2000 a day.

Thank you =)
Posted 12/28/2010 7:33 PM (GMT 0)
I found that 6000 per day had much more impact that 50,000 once per week. I took the 50k will little improvement, however when I started on 6,000 per day things got much better. My last test was in the 50s and the doc told me to go to 2,000 per day. She said that too much D3 in pill form can casue kidney stones
I get the SCD compliant D3 and I got 1,000 pills for like 15 bucks. Cheaper and more effective for me
Take care
Dave
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