Seeking advice

Bones, joints and muscles
1

Hi, My boyfriend was diagnosed with A.S. quite a few years ago and im looking for advice on how to better manage his pain and progression. 

He suffers alot with extreme pain and is finding it difficult to get any relief.

Some doctors are unsure how to help because he also has a stomach condition which prevents him from taking some pain medication. He is afraid to take meds that will supress his immune system for fear of getting more sick. Medication ive looked at seems to always be no good because of his stomach problems. 

Is there anything we could do to find him some relief? 

Any medications he could try that are safe on the stomach and immune system? 

Best doctors to see?

When should i become more worried about the progression of his pain? 

Please, any advice would be greatly appreciated

2

I really feel for you both. I have never experienced a prolonged episode of AS, but I've known some painful bouts with back muscle spasms. 

My GP kept prescribing meds with codeine which I threw up. For painful spasms bromazepam never really worked, terazepam is no longer available here where I live, but it was the only thing that would relax my muscles (I took it once in my life when I couldn't move my neck).

I learned that I must take good care of my stomach and avoid NSAIDs or anything that could potentially provoke or lead to more damage to the lining and flora of the intestines.

When the first really bad episode (for now also the last) was at its peak my rhumatologist prescribed nefopam (there are several brand names) which I was to take only when absolutely necessary for max. 3 days. It helped, but I didn't want to take too much and I only took it for 2 days. I started taking prednisolone (not a pain-killer, but when the inflammation disappears, so does the pain), which cut the inflammation short. It took a long time to get weened off the predisolone and to get back my adrenal glands to normal.

In the meantime I found some useful guided meditations on YT.

I also used that time when I was medicated to start a new diet and see what happens. You can look it up - no starch diet. There could be a link between starches, a certain type of bacteria and AS.

I also started taking curcuma, boswelia, probiotics (without prebiotics!).

I strongly suggest meditations, yoga. It helps manage the pain and also keeping us active which is necessary with this kind of illness.

In my experience there are no painkillers that come without side-effects, even if it's just drowsiness and that can be taken safely for prolonged periods of time. Some of them are really bad for your stomach and all of them can be a doorway to med/drug dependency. 

Hang in there!

3

I can tell you I suffer with a lot of pain my as is not in remission and doesn’t stop, I need 2 hips abs being 35 they won’t do it until I’m 40 which I’m gonna fight with them about soon but that’s hear no there I can tell you what’s worked for me.  I would wake up in so much pain I couldn’t stand and I was in tears so to avoid that they prescribed a patch that gives the medicine while I’m sleeping and it has changed my life I no longer have excruciating pain I can’t get out of, although I’m still in pain I found this really helped ....hope that helps 

4

Thank you for your reply.

Im so sorry you have to suffer with this awful disease. 

Were any of those medications any good for use? Im interested in the use of the prednisolone to reduce the inflammation would that be worth a try in your opinion?

I've been mentioning to him about doing some form of excercise ie yoga, stretching etc he tried and it seemed to show some help so im hopeful for that.

He does eat potatoes quite often (it's his favourite)  would it be a good idea for him to cut down and/or cut them out completely? Haven't read up on probiotics yet did they help you? It may be worh a try for him. 

Sorry for all the questions, just trying to learn as much as i can.

Thank you for your support, wish you the best! 

5

Im sorry you suffer in so much pain, its an awful way to live. May i ask why you have to wait till you're 40, is there an age requirement?

My bf experiences similar pain when he wakes up too. Cant tell you the amount of times he's tried to fight back tears becaise he"s hurting so much. 

Did your patch reduce your pain? May i ask its name? Is it worth trying? 

Thank you for your help. Good luck in your fight

6

Sure, the age is because the hardware is only good for so long I’ll have to repeat the surgeries so many times because I’m so young, I also find the patch is good because I don’t get any stomach upset because I’m not swallowing anything but I am on omeprezole for all my other meds which moderately helps, the patch is fentanyl I believe its 25micro grams and it gives that per hour and even though I’m still in pain it’s much more bareable especially cause I know how hard it is to wake up in all that pain sleeping is very bad for me but so is sitting and standing.  I hope this helps your boyfriend I really feel it changed my life for the better!

7

Hi Sammie-Lee,

I held off on the diet exercise for a long time.  I didn’t know that what I was eating made the inflammation (pain) so much worse.  As did the immobility.   I also gave in to the pain and spent long periods in bed. And the pain got worse, and worse.  I gained weight because it seemed my only pleasure was food.  

The pain was severe. I was very out of shape and had to start very slow. I built up my strength in the pool. I can do so much more in the pool as it doesn’t impact my joints. Feeling strong was very motivating.  I also got help with my eating. Using both professional and group help. 

Once I had the ability to exercise 30-60 minutes 3 or more times a week, it was as if I experienced a miracle!  I could do things, I had motivation, stamina and the pain was incredibly reduced. It lasted 3 years. 

(My doctor advised me to go back to work-it was a stressful desk job.). After a few months, it led to a 2 year flair with loads of problems. I stopped exercising and carried so much stress. I wasn’t taking care of myself. These things make my AS so much worse:  inactivity, stress, poor diet (sugar, white flour, basic junk) and over-extending myself.

There are different diets out there. As far as I see, certain specific foods may trigger some people, but not others.  I found potatoes definitely trigger inflammation for me, but I can have smaller, infrequent portions when the inflammation is down.   

In the past 2 months I’ve had the worst stomach upsets ever...  I’m finding certain foods can be very irritating for my digestion as well. I’m now looking into the FODMAP diet. 

I have also added foods that are recommended as anti-inflammatory, I found videos and food lists from reputable online sites. 

I do take a lot of medication, including meds for my stomach. Reglan allows me to take Diclofenac (NSAID). 

I think it’s important to point out that you really can’t make the changes for him. He needs to be managing how he treats his body, or failure is likely. 

Here’s my question for you:  who’s taking care of you?  Being a caregiver is exhausting physically, mentally and emotionally.  I hope you are doing tons of self-care. If not, I recommend it. Who knows, if he sees a positive change in your life and happiness he may join in!!

Take care

8

I forgot:  I’m using topical pain meds now and they’re very helpful. Lidocaine patches and Voltaren gel are my go-tos. Since they don’t circulate through my body side effects are limited. 

9

Sammie-Lee,

​  Just a couple of points.  First of all, prednisone is typically a God send when it comes to the pain of inflammation.  The huge problem is that you cannot take any variation of prednisone for any length of time.  It is a dangerous drug to take at higher doses for extended periods.  It works wonders but no reputable doctor would give you higher doses over an extended period.  Back before the newer biologics came into popularity my wife was taking prednisone long term and high dose for her RA.  She ended up needing a shoulder replacement and the surgeon and her rheumatologist both believed that it was the prednisone rather than the RA which caused the problem.  Also, I would not write off the biologics just because of your side effect concerns.  They work in situations where nothing else works.  Again, what got my wife off of prednisone was Remicade.  She has now been taking it for over 14 years and it has been a gift from God.  I have not had as much luck with the biologics for my AS but every case is different.  But again, I would not dismiss them just because of immune system suppression.  If nothing else works you do what must be done.

​Having said all that, there are many who swear by dietary changes stressing foods that are much less inflammatory.  There is a lot of information out there and if you are good at working with a dietary regimen there is certainly evidence that this helps.  Best of luck to you and I hope you find something that helps your boyfriend.  It's good of you to be concerned and looking for answers.

10

Oh no, sorry you're going to have to go through that. I wish you luck that you dont have to go through so many surgeries and something works for you. I will discuss with him about the patch, the idea of it releasing relief hourly may bring atleast some comfort to him. Right now anything we can try is worth a shot. Thank you so much for your assistance i wish you all the best and that you find some better relief too.

11

Hi Kathleen

Thank you for your story, it's such an eye opener to hear different perspevtives on how this disease has effected people so differently.

I never would've guessed food of all things could be a trigger for a.s (stomach yes but to a.s that surprised me). When i first read about excercise i was 50/50 about it. I thought exercise is good for the body but then also worried exercise may make the pain worse due to the physical aspect of the activity.

2 years in a flare! My goodness that sounds awful i feel for you so much, cannot imagine how bad you must of been feeling. I do hope you're feeling much better now.

I know that stress is a major factor and some things that cause stress cannot be avoided unfortunately but he is learning to find better ways to help deal with the emotional side of it.

One thing i have found to be frustrating is how so much is trial and error. One thing that may work for someone may not work for another. I think the food aspect is going to be hard as he is already limited to what he can eat already but it's all worth a try.

The fodmap diet im familiar with, i have heard of that before, maybe that will be a good place to start.

Did adding anti - inflammatory food help you in your opinion? Do you eat one thing a day that is anti - inflammatory or is there a certain limit you should consume?

I read NSAIDS were not so good to use, how does the Reglan assist you it taking one if i may ask?

I must assure you i am not trying to make changes for him i am simply trying to do my part in supporting him, educating myself and working together to manage a better life for the both of us.

I wholeheartedly appreciate your concern for my well being but as stressful as figuring this illness oit is, im doing ok. Which is one of my many worries. He takes care of me and his family amazingly he tends to put himself last alot of the time (not that he doesn't take care of himself he just puts other's first). He used to be very private about accepting help amd talking about his pain and struggles which alot of men tend to do, but he is seeing now he needs to let people in in order to get help and feel better.

Thank you again for assisting me with your advice and positive outlook this helps tremendously in knowing how to go forward. I wish you all the best Cathleen, sending positive vibes your way!

12

Thank you for your response.

Would it be worth trying prednisone at all? How often if he did would it be used?

Same question with Remicade, would it be worth trying?

I think its a good idea to try different things and of they dont work atleast we know rather than never attempting it and maybe losing out if it possibly could have worked.

Alot of things i am reading from people are stating diet has really helped them so definately going to get that all figured out. Food is a much more easier task to handle than the medication is. We'll see how that turns out.

Im sorry you've had no luck with the biologics either, i hope you're doing ok and not sufferering terribly.

I thank you for your advice, its been a great help to hear others stories it gives me some hope in trying new things. I hope you find something that helps for you and i am glad to hear your wife is doing so much better.

Best of luck to you both and thank you again.

13

Hi,

The Reglan controls my stomach acid so when I take the NSAID pill I do not have an upset stomach.

I didn’t mean to imply anything negative when I asked about your self-care. It can be exhausting being a caregiver. Over the years, I’ve learned that the better care I give to myself the better I am at helping others. I am more mobile, have less fatigue, am happier, and can do more for others. When I overlook myself I become crabby, isolated, etc. 

I fear facing AS without NSAIDS. 

I know how difficult life will be without anti-inflammatories. Because of other immune issues, I cannot take DMARDS or biologics.  Biologics do have the possibility of not only putting the disease in complete remission, but have reversed AS damage for some. I imagine that’s the dream for all of us. 

I don’t know if you’re aware that a body with AS and uncontrolled inflammation is at risk for permanent damage.  It can get ugly.  Not to mention the day-to-day suffering with pain and inflammation. 

There are many things to try to keep the inflammation down. As you’ve discovered, what works for one may not help the next person. Also, I’ve found approaches that work great for awhile, can stop working. I’ve tried many things. Here’s a partial list:  OTC pain relievers, ignoring the problem, physical therapy, pacing activity, chronic pain CBT,  electric and sound stimulation, meditation and mindfulness, acupuncture, low-impact exercise, prescription pain relief, topical pain relief (big fan), different foods, quality sleep, etc. 

I try to add anti-inflammatory foods as much as possible. Lately, my stomach has been very upset, and I’m limited these days. As I’ve made other changes along with diet I cannot calculate the exact benefits of my diet changes. I can confidently say I generally feel better when I eat healthier.   And I’m certain the more I move the less pain I experience - providing I pace myself and don’t injure my body. 

Today was a good day. I was productive, my pain was low and my tummy was calm. 

I hope this helps you understand what he’s experiencing.  I wish you both health and happiness. 

14

Hi.

Oh no dont worry i didnt take it in a negative way at all, i apologise if it came across that way. 

Yes i fully agree it can be exhausting and at some points it has been. That is my motivation behind reaching out to the community to learn more. Ofcourse it becomes hard to give to others if you're worn out from your own body so self care has to take a priority.

Ive heard of biologics but didnt know about dmards. Are they something that can be effective or best to stay away from?

Yes i am aware of the damage that can be done without assistance from medication and it is very scary to think about and watch a loved one suffer through. Can only hope that something works right so it doesnt progress to those stages. Im very fearful it may happen to him.

I know he has tried to cope more without medication but that doesnt seem to be helping much anymore. Light exercise and stretching and pacing does get his mind off the pain and if it isnt so bad helps to relieve some. But when its really bad he suffers alot.

I will definately have a talk with him about the things youve listed. Maybe something might stick.

Im so glad you had a good day today and i wish you many more ahead. Cant thank you enough for you help. 

15

Personally I wouldn't go down the prednisone path because there is no future there.  Everything should ideally be geared to long term maintenance because you are in this for the long haul.  Not much point to taking something that you will simply need to give up. Long term higher dose prednisone use causes structural damage of it's own and as I said, I don't think a reputable doctor would go there.  It is common to be given dose packs of prednisone to essentially snuff out a flare.  One thing you will find is that autoimmune diseases come at you in waves.  You can be feeling relatively alright for awhile and then you get hit with a wave that is referred to as a flare.  I have been given dose packs which can be effective in bringing you back to somewhat of a baseline.  But it's use is finite.  You take it for the length of the dose pack which is around six days of so.  For me I often get my best relief after surgeries.  I have had four spinal surgeries and now have six of the cervical vertebrae fused together (technically it is four cervical and two thoracic vertebrae).  But it is common practice to be given heavier doses of a prednisone derivative after spinal surgery to prevent inflammation from the carpentry that they do on the spine.  I often feel wonderful for some period after surgery beyond just what the surgeon has fixed.  I once told the surgeon he was a magician fixing my lumbar and cervical problems in one surgery.  Unfortunately it does not last.

​You made a point earlier about the biologics being hit and miss as well as many of the other treatments.  Good for one person and not as good for someone else.  I believe that is because we are still treating the symptoms and not addressing the underlying causes.  Even the biologics are not all the same.  Some of the newer ones like Cosentyx have a different mode of action than the older ones like Remicade.  One biologic may help you while another won't. I am even trying a diferent variation of a biologic that I rried before.  I took Simponi in a self injectable form with little effect before and now my rheumatologist is trying Simponi Aria which is an infusion form of the same medicine which she has higher hopes for.   It is a trial and error process but unfortunately that is true of many of the autoimmune diseases, not just AS.  It can be as much of an art form as it is science.  You have to find what works for you which includes drugs and diet.  Here's hoping your boyfriend can find that best combination for him.  Doing the research that you are helping him with is the key to a good start.  Best wishes.

16

Hi CtKathleen, thanks for all the information.  You mentioned diet changes for your flares.  Have you found anything that Really helps?  When I’m in a “full flare”, my food goes right through me and the pain is unbearable.  I’m not a big cook and I hate being in the kitchen too long.  I’m looking for things that are fast, easy, and tasty.   Do you have any suggestions?  Also, I’m looking into various topical treatments as Tylenol 3 is what I take now.

Thanks

17

Hi Yvonne, 

When I’m in a full flare, I can do little with food prep or anything else.  To try to pull myself out, I usually use stretching, attempt activity and getting some daylight. And playing  with my dog can bring a laugh.   I also have digestive struggles during flares.  High levels of pain cause vomiting for me. I’ve found popcorn and water help my stomach calm a bit. 

When I cook, I make extra. I freeze portions for when I’m busy or under the weather - it’s a quick few minutes in the microwave. I also turn to easy healthy foods. I love fruits.  I always have lots of frozen veggies and pre-cooked quinoa, sauce, etc to mix in. Buying pre-bagged salads are easy, too. 

I started doing this when I realized how much garbage is in the prepared foods I was eating, (And that they were contributing to the pain.) I went back and forth between healthy diet and junk to confirm the difference-I don’t recommend it!

I have a friend who doesn’t like to think about food during the week. She’s very busy, healthy and has a healthy diet. Every Sunday she prepares her meals for the week. She shops, cooks and packages in a few hours.  I wish I could be this disciplined! 🙃

There’s much info out there on diets.  Some say it’s life changing.  For me, it’s one piece of the puzzle that I can actively manage to improve my day.  

18

Thank you so much!