First stage of treatment

[steve-H]

Hi, my GI doc has said to me that the first stage of treatment is that of prednisolone and I cant go down any of the other routes until I have tried this?

I am having another stool test, and if the levels are elevated again (I think they are measuring inflamtion from the stool?) Then I am to be started on pred. I am from the UK so on the NHS.

Does all this seem normal? I have very little faith in doctors so any feedback/expierence is welcome.

Thanks
Steve

 

[CrohnsChicago]

Prednisolone is closely related to prednisone.

Steroids such as prednisolone are very common first methods of attack. This is because they work to treat the problem immediately. All other treatment options can take weeks or months to kick in. With steroids inflammation can be quickly brought down and you tend to notice the beginning of relief within a matter of days. Steroids are meant to be a short-term treatment plan because of all the potential side effects. Immunosuppressors and biologics are considered long-term/maintenance treatment plans which tend to follow steroids in the typical treatment pyramid.

This link provides descriptions of the common treatment options for crohns:
http://www.ccfa.org/resources/types-of-medications.html

Also here is the common bottom-up pyramid that GIs use to treat patients with IBD. The link also provides helpful info on common treatment options:

Source:http://www.ibdclinic.ca/for-patients/information/treatment/


That he says you cannot go down any other route, however may not necessarily be the case. There are other options available for you to look into (for example there are other doctors who prefer the top-down treatment plan), but it is all a matter of preference both by the doctor and by the patient.

Without knowing all of your symptoms or diagnosis, I suspect he is saying you need prednisolone to try and get things under control sooner rather than later while he determines what the long term treatment plan will be for you.

Every person with crohn's is different. We all experience different symptoms. Some go into remission, some find moderate relief and some never seem to find relief. There is no "One Size Fits All" plan. You and your GI need to be able to work together and have open communication about symptoms and treatment options if you are going to find something that truly works for you.

 

[UnXmas]

On the NHS you are always entitled to a second opinion. You can ask your GP to refer you to a different gastroenterologist if you want to see if there are other options, however you will probably have to wait several weeks for an appointment and it might well be that the second gastro suggests steroids as well, since, as Crohn'sChicago said, prednisolone and similar steroids are a common option for the first attempt at treatment and can be very effective. Steroids are usually a short-term treatment where possible due to their side effects. You might want to ask your gastroenterologist whether he plans to switch you to something else following the prednisolone treatment and what that would be.

Do you have any particular fears about the prednisolone?

 

[steve-H]

My only concern I have been on steroids for 4 years already (hc for adrenals, at a much lower dose than needed for crohn's.) and then to take pred at a high dose I know can cause problems with my bones. My doc is aware of this but still suggested this treatment.

He did say once I have taken a 2 month course of pred then other options can be explored.

 

[Tesscorm]

When my son was diagnosed, he was treated with one week of flagyl through IV (he was inpatient at the time) and was commenced on exclusive enteral nutrition (EEN) for six weeks and he had great success with it.

In certain situations, EEN has a comparable success rate at inducing remission as steroids. I believe the success rate may not be as high in adults as in children (having said that, my son was almost 17, 140 lbs before getting sick and 5'10" - so not a small/young child) and EEN works better at alleviating inflammation in the small bowel/terminal ileum areas (although, again, my son's response was a bit different - EEN cleared inflammation in his duodenum and colon but left some inflammation in his terminal ileum).

EEN has no side effects but does provide nutrition, is anti-inflammatory, provides bowel rest, is very easily digested and has shown to aid in mucosal healing. My son had been sick, off and on, for 3 months, ending up in the hospital. Within 2 weeks of beginning EEN (including the week on flagyl), he was back at school, doing a couple of hours of phys.ed. classes per day and playing on his hockey teams (although, a bit weaker than before getting sick). It is a challenging treatment - EEN means NO food for six weeks (sometimes longer), your nutrition comes completely from nutritional formulas. The formula can be ingested orally through shakes (modulen, peptamen, etc.) or through naso-gastric tube (as my son did). The 'best' formulas (in the sense that they are most broken down, most easily digested, etc.) are the elemental for semi-elemental formulas, however, the more 'elemental', the worse they taste. My son inserted an NG tube each night and ingested an elemental formula overnight so taste was not an issue.

If you have any questions, please let me know. There is also a section on EEN in the Treatment subforum.

Good luck!

 

[UnXmas]

My only concern I have been on steroids for 4 years already (hc for adrenals, at a much lower dose than needed for crohn's.) and then to take pred at a high dose I know can cause problems with my bones. My doc is aware of this but still suggested this treatment.

He did say once I have taken a 2 month course of pred then other options can be explored.

Loss of bone density is definitely a valid concern about steroid use. It is a long term problem though, so if you go on a high dose just for a couple of months it shouldn't have too terrible effects on your bones, though it's always difficult to be certain in advance how long you will take to respond to steroids, and I can see why even two months is a worry having already been on steroids so long.

Have you had a DEXA scan (assesses bone density)? There are some measures you can take to minimise bone loss, if you do decide to go with the pred option (if you're not already): taking vitamin D and calcium supplements can help, making sure you get good nutrition generally and are not underweight, doing "weight-bearing" exercise, and if you do get osteoporosis you can take bisphosphonate medications.

I've had osteoporosis for years but have never had a fracture so far - it might be that although there is no good choice here, your doctor believes Crohn's poses a bigger risk to your well-being than loss of bone density, as a bad case of Crohn's could lead to surgeries, etc. which could be worse that losing bone density, which is painless as long as no fractures occur. (Although I do feel that one day my osteoporosis will catch up with me, and wonder if I've just been incredibly lucky to go so long with osteoporosis and no broken bones.)

It is a hard decision but your concerns are valid, so if you're still wary that even with preventative measures you don't want to take a risk with your bones, it might well be worth getting a second opinion and see if you can find a gastroenterologist who offers a different idea about where to start with treatment. Also have you seen a rheumatologist? They'd be the specialists who deal with osteopenia and osteoporosis, and it might be worth getting a rheumatologist's perspective on your situation as they will focus on your bones where perhaps (for obvious reasons) a gastroenterologist is more concerned with treating your Crohn's.