Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club painful heels

Hi everyone,
I'm new to this group. I am a 29 yr old female and have had spondylorapthy since I have been 15. ( Didn't get diagnosed till I was 27). I have problems with my back but my main issue is with my heels. I have terrible heel pain in both heels...mainly enthesitis. I was wondering if any of you have had good success with any particular medicine that helped this area? I have been taking sulfasalizine for a while now and it helps my back..but very slight on my feet. I tried Embrel and it didn't work. I am at a cross road-not sure if I should try Methotrexate (scared of the hair falling out side effect) or to move on to the Humira (but nervous about the side effects with that too). I know I can't stay like this forever, as I have so many restrictions and limitations from this heel pain..but the meds are scary. I'm wondering--do I have to be this afraid (like all of my google research has made me)? Or have you guys had good success? Thanks!

I am well past 20, but I'll give you some hints,
naproxen makes a big difference to my heels - have you tried any NSAIDs?

when the area around heel/ankle gets swollen, sometimes ice helps (but not always)
I wear custom made orthotics which really help my feet, so seeing a good podiatrist may be useful

stretching your Achilles tendon can help too
good luck!

If you were game to try Enbrel, there's really no reason not to try Humira. It carries a pretty well identical safety profile, since they're the same class of medication. I did extremely well with Humira, though it did eventually stop working for me. Simponi, another TNF inhibitor like Enbrel & Humira, seems to be working for me now. Enbrel didn't work for me either. I don't actually have heel pain as a symptom as of yet, but Humira did wonders for so, so many of my arthritis symptoms.

sorry you're dealing with heel pain. i had 7 months of it this year, and it was miserable. i didn't add any additional meds beyond my NSAID to treat it, so i can't help there. i toyed with adding another med, but being super vigilant about what i wore on my feet during that time and getting wayyyy more aggressive with icing finally brought it down. i have friends that have had relief with mtx and humira (for other peripheral issues/diseases)- good luck with whatever you decide.

I have tried all nsaids..several orthotics..stretching..ice..cortisone injections..you name it these feet have tried it lol. That's why I am up for the big time medications right now..

thanks for the reply..wondering when you were on Humira--how was it? Did you get sick a lot or minimal side effects? Ever try methotrexate or no?

how many times a day did you ice? and your friends that had relief with mtx and humira--did they experience a lot of side effects or relatively minimal?

did your friends use mtx and humira together for their peripheral issues or just alone?

I have never tried methotrexate. My rheumatologists have all thought it's a poor match for me as I struggle with a lot of gastrointestinal problems, including nausea, and they don't want a medication to exacerbate the problem.

As for Humira, it was great. I actually never had a single infection while on it. I've had a few on Enbrel and Simponi, but I think they were all coincidental. They were all treated easily enough. I did have pretty bad site reactions with Humira (but not with either of the others), but the medication worked so well for me that it was completely worth it. If Humira hadn't stopped working, I'd gladly still be dealing with site reactions today.

I've actually had good success with curcumin pills for peripheral pain. I know it's an alernative treatment, but hey, its worked for me.

thanks..I've actually seen them before. Are you taking remicade because that doesn't work enough or for other issues unrelated from peripheral pain?

sorry just your post.

The peripheral pain was never really my main problem, it was annoying, but I could deal with it. My main problem is my upper back, and the curcumin just doesn't even touch that pain. For the peripheral pain though, the curcumin was almost miracle-like. I really suggest at least giving it a try. And if you do try it, I was taking about 3 to 4 500mg pills a day.

I actually just started remicade a week ago. And I started it because my back symptoms were just progressing too much and I couldn't take it anymore. The remicade hasn't really done much yet, but I'm hoping I feel some effect after my 2nd infusion.

I know I'm late to this party, but heres what I have to say!

I'm on mtx and still have horrible heel pain. Have tried almost everything to try and sort it out- even went as far as strapping my foot and putting a guard on it to try and see if that wouldn't help.

I'm a teacher, so I'm on my feet 99% of the day, so I understand how painful it can be! What I have found that works is a pair of shoes. Who would have thought!!!

I bought a pair of "skechers go walk" and it feels like I'm walking on air! Most comfy shoes I've ever had! Has made a big difference with my heel pain- it almost "cushions the blow".

Here's the link for the pair I have :
http://www.skechers.com/style/13522/skechers-gowalk-everyday/bkw

If medication doesn't work- maybe take a look at shoes!

Lease

Absolutely look at shoes. I live in Clark's shoes 95% of the time because my beloved, adorable, cheap shoes from Target and Payless absolutely kill my feet now that my PsA is active. My foot pain is more in my toes and arches, but I'm sure heels can be effected by footwear too!

ok..thank you for the info. But does the curcuim give you hearburn? (I saw you say you take nexium for that and something else) Heartburn is a major issue for me..so wondering if that affects it. Thanks!!

Thank you for the advice everyone...it's much appreciated. But,I have tried every conceivable shoe, orthotic for the past 15 years since this has begun in my heels. Have had surgery, injections, physical therapy..you name it.. these feet have tried it. I couldn't even imagine being a teacher..the heel pain starts 10 minutes after standing in the beginning of the day and just continues on all day. @Mike..maybe I will give the natural stuff a whirl, if it doesn't cause heartburn? But looks like I'm getting close to the Humira because I can not deal with the limitations/restrictions of this heel pain anymore.

Also, @Mike --do you know if you can take the curcuim with an anti-depressant? I have so much anxiety from all this pain..have to take an anti-depressant as well.

I'm sure you can. Curcumin is alot safer than an NSAID or something. Curcumin is basically just the spice turmeric.

I think its only downside is that can increase stomach acid a little bit, but again, its way safer on your stomach than an NSAID.

Ok thanks...but did you get heartburn from it?

Hi Laurru- My son is now 17 but was diagnosed at 11. I had been taking him in for heel pain for 2 years before that-that was his first symptom- but it wasn't until his ankles swelled visibly that he was finally diagnosed. His heal pain was severe enough that it was difficult for him to walk sometimes. He started off on MTX, mostly because our insurance required it before they would authorize any TNF blockers. He was finally put on Enbrel, which was a miracle drug for him. When it became less effective after a couple of years, he switched to Humira and is still using it.

The MTX really did little to help and he eventually discontinued it, after using it for about 1-1/2 yrs. along with the Enbrel. It did not have any side effects and definitely did not affect his hair- he has really thick curly hair and did not lose any of it!!! NSAIDS did help a bit but tore up his stomach. Really, the anti-TNF's have been the most effective, and he has had no side effects of any kind. How long were you on Enbrel before you stopped? I know it can take several months to start working. Even if you had no luck w/ Enbrel, you might consider one of the other drugs in that class. Sometimes one will be ineffective, but another similar drug may work.

Don't give up- there are so many options out there for you. Best of luck!

Hi,

I don't know if your still there...but I just saw this post now, sorry. What kind of arthritis was your son diagnosed with? Is he just on Humira still? Did that help his severe heel pain? Did he ever have burning in his heels too?

Hi Laurru- I actually haven't been on these boards for a while and just happened to see this. My son was originally diagnosed with undifferentiated Spondylitis, but now is classified as having Ankylosing Spondylitis. Often juveniles who are diagnosed go into remission when they go through puberty, but unfortunately my son did not. Yes- he did have a burning sensation and pain and tightness in his heels, which results from enthesitis, or inflammation where the tendons and ligaments connect to the bone. His was severe enough that it was often difficult to walk and he was having trouble with sports. I had been taking him to the Dr. off and on for almost 2 years with heel pain and just kept getting that it was from overuse and he needed to rest. He was fortunate in a way that his ankles finally swelled because it led to a definitive diagnosis.

He is still (now age 19) using Humira weekly to manage and is having very good results. He had done so well that I kept thinking maybe he was growing out of it, but if he misses a dose, he quickly becomes very stiff and achy, so obviously it is just a case of the meds working very well. He was having some flare-ups about a year ago and the Dr. added Sulfasalazine to his Humira. It worked well and he has now been able to discontinue it. I just mentioned on another thread that as part of a college athletics team, he has been doing yoga twice a week and he is amazed at how much it helps. He says he feels the effects through the next day and he wishes he had taken it up a long time ago. With his Humira, is able to play with his college soccer team and is doing well. His training includes a lot of running and he has not had trouble keeping up. Have you had any better luck with other meds- I remember the first one you tried wasn't working well. Hopefully you have found something in the meantime!

Thank you for the detailed response. Just wondering, does he have any back pain? Did anything ever show in his blood work? Is he afraid of the side effects? This is a really encouraging story that your son is able to do so well from the med. Thank you for sharing this with me.

funny- he just texted me tonight to tell me he is having some back pain. He has had some lower back and hip pain before, but mostly a lot of stiffness there. It is mostly controlled by the meds, although I suspect that compared to a "normal" person he has more pain than most. When he first started his Enbrel 8 years ago, he commented he didn't know that he hurt so much until he started his meds and it felt better, as he just thought that's the way everyone felt. I think he probably had symptoms at a very young age (4 or 5) because he always had a funny, stiff walk- we just didn't know any better.

He does routine blood tests every 3 months and has never had any issues with blood work. The Dr. was actually more concerned about both the methotrexate and the sulfasalazine than about his Humira so I'm glad he has been able to discontinue both of those. Enbrel/Humira have been like miracle drugs for him and hopefully will continue to work. It was a hard decision originally to put an 11 year old on these drugs, but his quality of life would not have been good without them, and we feel like with blood tests, we are keeping a good handle on any harmful side effects.

He has had great results so far, but I do think it is from a combination of meds and constant physical activity. I know that when he can't exercise, he stiffens up quickly. Lucky for us he is our "active" child!!!

Thats really great. Prior to meds, did his bloodwork ever reveal arthritis? Like was anything ever elevated?

He is HLA-B27 negative, but before starting meds, his inflammation markers were through the roof. After starting Enbrel they dropped to normal. He went through a fairly big flare:-p a few years later and tested high again, but returned to normal after being switched to Humira. He has generally tested fairly normal as long as he has stayed on meds- his levels have gone up a few times when he went off meds short-term due to other illnesses.

here's really no reason not to try Humira. It carries a pretty well identical safety profile, since they're the same class of medication. I did extremely well with Humira, though it did eventually stop working for me. Simponi, another TNF inhibitor like Enbrel & Humira, seems to be working for me now. Enbrel didn't work for me either. I don't actually have heel pain as a symptom as of yet, but Humira did wonders for so, so many of my arthritis symptoms.