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[Smokey]

Hi everyone

As many of you will already know I have Ms and have had it for nearly 6 years now, not to bad no disability as yet but a few things have arrived and now I qualify to start a DMD.

I shall be starting Tecfidera at the weekend and it's a capsul taken twice each day.

I must admit I am a little nervous, and wondering if I will get any side effects
But I must think positive! As 50% of people don't get any!

The side effects could be nausea,stomach pain,headache and flushes!
But I'm more worried about the stomach pain which will be like indigestion and at the moment I'm having a bad time and I've not started the drug yet!

As I've recently had the Mirena Coil fitted I'm spotting every day at the moment and that I think is what is causing my indigestion problems. I've started cutting out stuff like tea, tomatoes, o juice, chocolate , and my beloved Borrocca. To make matters worse the new drug should be taken with food containing a high fat content as this reduces side effects.

I'm currently taking Ranitidine  but I'm still getting pain, I was previously on Omeprozale then lanspranol  do these Ranitidine take time to work, as I've only been on them a couple of days. Am I to impatient ?
If anyone is on them and knows could you let me know please?

I'll keep you up dated at how I'm doing with my treatment once I start.

Ann x

[CLKD]

DMD - ? what ?

Have you tried something simpler for the indigestion, i.e. Rennies?  I find that, or Milk of Magnesia helpful.  Basic  .

[Ju Ju]

All the best, Smokey! Is this a new treatment?

[Taz2]

DMD - ? what ?

It stands for Disease Modifying Drug

Taz x

[Smokey]

CLKD - not sure if I can take rennie or anything else whilst taking Ranitidine.
Guess I could ask pharmacist.

Juju - the treatment is relatively new, approved last year I believe.
Thanks for your good wishes.

Ann x

[Kathleen]

Hello Smokey.

I just wanted to wish you good luck with your treatment. Please do keep us posted.

Take care.

K.
PS. Taz2  - Well done for knowing what DMD stands for.
CLKD - Clearly not a term used back in the day.

PPS Here's hoping we will soon see some DCD (Disease Curing Drugs) available soon.

[Evelyn63]

Wishing you good luck Smokey with minimum side effects.  I think Ranitudine deals with heartburn and works as an antacid.  Omerpazole is a PPI ( Protein Pump Inhibitor) which works on gastric juices and prevents acid actually forming .  So, they act slightly differently.  One works on the symptoms and the other prevents the symptoms occurring.  At least, that's what I think......?

[countrybumpkin]

I am a veteren of antacid drugs having had a hiatus hernia since I was 19.
I am taking ranitidine as I cannot take ppi drugs like omeprazole and lansoprazole. the ppi drugs stop you producing any stomach acid and if they can be tolerated they are very good for acid reflux/hiatus hernia but they do have long term effects even in those who don't get side effects. Sadly I reacted very badly to them but they did completely get rid of my heartburn.
Ranitidine is an older anti ulcer drug that works in a different way and reduces stomach acid but does not get rid of it so they are not as effective as the ppi drugs.
I have found that I have to stick to a very rigid diet with a huge list of cannot eat foods. Just one mouthful of anything with oats in it or  even a teaspoon of alcohol will give me crippling acid in 30 mins. I never ever eat cake or anything with herbs/spices or soya - I won't bore you with the list!
As long as I don't eat any of the " banned" foods then I have no heartburn at all and thankfully still have a healthy diet. Keeping a food/symptom diary is what sorted me out.
I understand you wariness of the ms drug as I find that any drug that says it might affect your stomach for me is a total no no - all anti depressants give me awful heartburn and I cannot go near anti inflams.
You can only try.
Do you have time to keep a food/symptom diary for a couple of weeks so you can work out your danger food and get the stomach under control and then start the new drug?

[countrybumpkin]

Forgot to say you can take other over the counter antacids like gaviscon and rennies with ranitidine just not at the same time.

[Smokey]

Thanks

Well my medication was delivered to my local hospital  earlier than expected and we collected them last night.

I decided to take the plunge and start straight away with breakfast this morning, I have swoped my normal breakfast this morning for 2 slices of full fat peanut butter on toast and was actually not to bad. I do wonder how my stomach will react to the peanut butter so we shall see.

Thanks Countrybumpkin for all the info on Ranitidine that's handy to know that I can still take over the counter stuff if need be.
I have started cutting out a few things already from my diet which may agrivate my stomach. I also need to make a list of full fat things to eat with the time I take my med, as I don't really want peanut butter on toast every morning. I think some people that eat weetabix etc like me actually add some full fat cream to the milk, I guess it's all about experimenting to see what works best.
The funny thing is tea gives me indigestion and yet a large slice of cadburys chocolate roll didnt😋

At least the capsels arnt to big a bit bigger than Omeprozale but manageable !
Maybe I can have a peanut butter smoothy with my breakfast !

Ann x

[Smokey]

Hi Thanks Sparkle

Two hrs after my med I just had a slight flush in my face which lasted about 10 minutes, that was it no heartburn or indigestion at all. The strange thing is I had my cereal at lunchtime cause I needed the iron cause I'm a bit low again! And the shopping wasn't coming until three. Immediately afterwards I had indigestion! It did go on its own and only lasted about an hour.
Then later on I had a 0% 0%fat youghart and again indigestion after ! Now I'm wondering if I'm sensertive to milk or one of the ingredients.

I've got to think about tomorrow's breakfast not sure what I'm going to have!

Ann x

[countrybumpkin]

I can't have soya but use goats milk instead of cows milk and my constant gunky sinuses improved immensely. I do still have cows milk when out but only the amount in a coffee and eat goats milk yoghurt and cheese as well.
If you want to keep on the full fat dairy this is something you could try and see if you are okay with it.

[Mardy]

Tea made with tea bags can give me indigestion, but I'm okay with loose tea. I don't know if it's the bleach in ordinary teabag or the actual tea, but I now prefer a good loose tea.

Ginger can be helpful for digestion.

All the best with everything.

[Smokey]

Hi everyone

A quick update, I'm now on two 120mg capsules each day one In The morning and one with tea at night.
Still getting the odd indigestion but now I've been prescribed one Lanspranol before breakfast and one Ranitidine before tea. However no other side effects. Wednesday I shall be moving on to higher dose 120mg and 240mg so we will see how my side effects are then.This will be the start of week 3 of treatment.

I have changed my breakfast of Weetabix to cornflakes as it turns out I was getting indigestion about two hours after! Strange ! But nothing would surprise me with menopause now🙄Xx


Ann x

[Tempest]

I'm lactose intolerant and use Lactofree milk which is freely available. If I load lactose, one of the first symptoms is reflux. I also find that normal tea gives me horrible reflux too. Decaf. tea doesn't, and I find the Twinings Everyday Decaffeinated to be far better tasting than any other.

Good luck with your new drug protocol, Smokey! I hope it all settles into place for you soon.