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Chills No Fever. Prednisone Withdrawal??

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samman

I am currently on prednisone 5 mg after about 3-4 months of tapering from 40mg for Crohn's. I had a sore throat that I took antibiotics for along with a cold about three weeks ago. The cold and sore throat went away. Now I have had another cold that has mostly subsided with no major symptoms by itself.

However with a cold or not I am getting rare chills with nearly no other symptoms. No abdominal pain, no fever, no sweating, or any other major issue that I can associate with a cold or infection. I am on lialda and the 5 mg of prednisone. I have been tired but can not tell if its from the cold or prednisone withdrawal.

Has anyone had chills feeling hot with withdrawal? Mine are very rare but happen mostly at night before I go to sleep. I feel hot but don't have a fever. I have never gotten chills except with fever throughout my lifetime. Any other possibilities. Can you have chills with an infection but no fever? My doctor barely gave me antibiotics because I didn't have a fever last time and she said she would because of my throat and the possibility of a viral and bacterial infection. She thought it was a viral infection that was subsiding because I did not have a high fever.
 
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samman

I get a chill that you would get when you have a high fever or when your really cold and take a hot shower. Kind of goes up the back. Sometimes you get the feeling when you get goosebumps from watching something amazing. Only thing is I'm not getting it with a fever. My face feels hot but when I ask someone to touch me forehead including my doctor they said it felt normal. It kind of makes you feel weird like you think your sick and your not. I just wanted to know if it is a prednisone tapering issue or not. Its gotten a bit better since the post.
 
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24601

Location
London, UK
Hi Samman,
Welcome to the forum! How are your inflammatory markers at the moment? Feeling feverish (even without a high temperature) can be associated with active disease.

Also just looking at your signature, have you had Crohn's confirmed in your stomach and duodenum? Or is the inflammation in your stomach and duodenum not due to Crohn's but reflux - for which you take Protonix? I'm concerned otherwise that Lialda wouldn't be an appropriate choice of medication for your Crohn's if the areas listed in your signature are all Crohn's disease!
 
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samman

Thank you for replying. They took a biopsy a while back for colon and diagnosed Crohn's. I have not had any diaharrea or pain and feel practically nothing wrong except some minor acid which I had after the more recent EGD (acid started right after because I did not feel it the day before and has gotten better in two days).

I just had a biopsy from duoedenum which I have not got the results for yet. However the Dr said I do have moderate inflammation of Duodenum but no active Crohn's in colon only scarring and pseudopolyps. She is recommending that I get on 6mp and biologics.

The chills have almost faded since then and I got only a slight feeling today. Much less than when I posted to the forum. I was curious if this is from taper or not because drs never give a direct answer. They are just ready to get me on 6 mp and biologics.

I want to only start with 6 mp as I may not want to do both for several reasons. The first being that I don't want too much immune suppression of biologics and 6mp. Plus my insurance situation may fluctuate in the near future along with possibility of traveling long term where biologics might not be available. Do you think biologics may be overkill as I only had two flares in 8 years and both were untreated until I found out on the second flare that I had Crohn's. I really dont feel like using up biologics besides insurance and travel issues because of the fact that its not good to stop and start again (antibodies against biologics). I read that there is slight positive difference in remission rates for dual treatment vs 6mp so why would Dr push both especially with inconvenience and future health concerns?

I know its a lot to answer in one post but I would appreciate suggestions and I know ultimately I will need to discuss this when my appt date comes. I know llialda is not for duodenum. My real dilemma is biologics as I did well on tpmt enzyme test and may not have much trouble with 6mp (hopefully).

Would you or anyone like to chime in on what they would do in my situation. I feel like getting on 6mp and wait a few years in hopes of better and more research on newer biologics and treatments that still do not have enough data. Ex. Entyvio, etc. They seem to be more targeted for Crohn's vs anti tnf. I feel that my docs are trying to play it too safe but aren't considering lifestyle /financial reasons that I may have if insurance changes.
 
2

24601

Location
London, UK
I do understand that this is a difficult decision and that it is a personal one that can be affected by many factors.

I can't say for sure what I'd do in your particular circumstances but here's what I would be considering:
* You already have scarring and this is a serious complication of Crohn's. If the scarred areas of bowel become symptomatic (usually if they become too narrow) then the only way to treat this currently is surgery. With narrowed sections of bowel there comes the risk of perforation which requires emergency surgery.

* The best longterm prognosis is associated with "top-down" therapy - which currently means the use of biologics. While no one can predict the future course of your disease, and you may currently feel your doctors are playing it safe and this treatment is too aggressive, it does sound like they are offering you the best current treatment for Crohn's disease. All treatments for Crohn's work better when used earlier in the course of the disease and if you can achieve mucosal healing then that increases the likelihood of a better longterm outcome. For that reason I would not be thinking about saving Remicade for later, I'd use it now in combination with an immunosuppressant.

* I understand your thinking about Entyvio but many people have achieved very good results on Remicade and many do not suffer from adverse reactions or side effects. The reasoning behind Entyvio sounds great (more targeted and disease specific) but sometimes the scientific logic behind the treatment doesn't translate into results. I agree that it'll be very interesting to see the results of Entyvio as more data becomes available.

* If you do have Crohn's in the duodenum or stomach I would absolutely go with a biologic straight away. Both of these locations present more difficulty in terms of dealing with scar tissue (and higher risks) compared with the scarring already seen in your colon.

* There will be better meds coming for Crohn's but you need to use what is currently available to maintain your bowel so that you can benefit from the improved and more targeted therapies when they arrive.

I do think it can be harder for those who have few symptoms and far apart flares to accept the idea of longterm medications but the reality is the two flares you have caused scarring. I wouldn't want to risk more damage and I think I would go with the treatment your doctor recommends.

The risks associated with these meds - while frightening to read about - are also in reality quite low. I truly do understand how off putting those risks can be but having had Crohn's for many years and read so many other people's experiences as well as studies, I know that the risks of undertreated Crohn's is much higher.

Good luck with your decision! I know it's not easy. Do keep us updated!
 
S

samman

I sincerely appreciate the thorough response and all your points make extreme sense from a health standpoint. The only reasons I had issues with biologics were insurance, finance, and the fact that I may not be able to take them in places of travel pertaining to my business (long term future travels/biologics are expensive without insurance and I can not get future supplies due to refrigeration/cost and the insurance complications). I noticed your posting from the UK and you have universal coverage so your decision would be so much easier than mine. I own my own business and my financial status jumps based on investments in my company. The travel issues of countries that I may not have the biologics available are my concern in terms of reserving biologics for a time where I can continue to take them without stop/start cycles (building resistance to them). I don't think its a good idea from what I understand to take it for 6 months and stop for another 6 months due to being away. I guess in short what I really want to know is how successful 6mp is for obtaining long term remission. The two flares I've had in 8 years are probably what caused the scarring and that is mainly due to the fact that I had no clue it was Crohn's and did not treat them until the second time and very late the second time. I really don't feel that I am in the severe stage (no symptoms at all) but I don't also want to be ignorant enough to cause permanent damage. From what I understand some people on some drug rating websites/forums some people do really well on 6mp for a prolonged period. If I can be on it for years until generics for biologics come out (become more readily available and I don't have to depend on insurance to take it).

I looked at the SONIC study and realize the benefits you defined and it is almost double the efficacy to use both therapies vs 6mp alone. If anyone can chime in on how well they have done on 6mp alone it would really be helpful. I wish I was a rich guy to not have to make these sort of decisions and be locked down to US therapy.

SONIC study says 46% both therapies, 35% Infliximab alone, 24% 6MP alone.

I'm posting the SONIC study not just to help with my post but I think it may be useful to others on the forum.

http://www.nejm.org/doi/full/10.1056/NEJMoa0904492

Biosimilars:
https://www.kevinabarnes.com/is-generic-remicade-humira-etc-in-our-future-update/

Another question for anyone besides how well they have done with 6MP in the long term is if Duodenum issues are much easier to treat than colon issues with 6mp.

Again thank you for your reply it was very logical and well put. You explained it shortly and better than my two Drs have lol. I wish I had the situation to not have think twice about the best treatments out there. I don't want to push anyone out there to not listen to my great friends reply here but in my case it requires a sacrifice of my kids schooling, my businesses future, and my travels to get the best treatment. I think I may try 6mp and get my self monitored closely (endoscopically) and move to biologics if I see that I am losing ground and don't have healthy mucosa.

LETS GO BIOSIMILARS LETS GO!!
 
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