Side Effects of HSCT for Autoimmune (AI) Diseases

Time for me to write the post I promised to write and I’m sure this will be another post of mine that gets me a lot of hate mail, such is life. Everyone on HSCT groups sees the same list of side effects being posted, and it is a great list, but it does not include all the possible side effects and never lists the bad side effects.  Now there are the armchair HSCT experts on the groups that swear a lot of these issues are not related to the HSCT procedure at all, but in most cases there is absolutely nothing else that could lead to these issues, so I would assume HSCT is the culprit, everyone can make their own decisions on that. Many people in the past have posted scientific articles that pertain to some of these side effects of HSCT on the main groups and those people have been booted from the groups and their posts deleted.  Also these side effects are massively downplayed like they are super rare, when in some cases they are not.  I personally feel everyone should be able to see what all side effects could happen, so they can take that into consideration before undergoing HSCT and also so they can be watchful of these issues when they return home.  I compiled this list of possible side effects off of 2 HSCT veterans groups, one of which I have been deleted from because one of the moderators seen that I was going to be doing a list like this and apparently I’m the devil.  I’ve been called worse. I may be deleted off the other one after this post….hard to say.  God forbid you want people to have knowledge before undergoing a major and possibly life-changing medical procedure.

So to start out I will do a list of the most common side-effects from the HSCT procedure that people may experience afterwards.  This includes everything from the list that is often posted on HSCT groups and then quite a few more.  I’d say that in reading the veteran’s groups these issues occur in a minimum of at least 25% of all patients, with some symptoms occurring in almost everyone.   The next group of side effects is less common and I’d say occurs in about 1-10% of all patients after HSCT, the percentage really depends on the exact issue.  These side effects are the controversial ones that some people say are not related to the procedure, but the patients’ doctors themselves all say they are related to the procedure, but they are important to consider because they could happen and it’s best to at least research this prior to having the procedure done just so you know what to watch for when you get home. Then the last category is rare side effects, they happen less than 1% of the time, but can and do happen, so it is something to be aware of.

Common Side Effects of HSCT (25-100% of Patients)

  • Loss of Hair (Almost Everyone)
  • Patchy Hair Loss After Initial Hair Regrowth
  • Worsening of Old Symptoms (May Stay Permanently Worse Than Pre-HSCT)
  • Dry, Flaky Skin
  • Dry, Cracked and Bleeding Fingertips/Toes
  • Joint Pain
  • Bone Pain
  • Hot Flashes
  • Night Sweats/Sweating
  • Chills
  • Problems Regulating Body Temperature (Always Hot/Always Cold)
  • Chemo Brain/Cognitive Issues
  • Overall Body Weakness
  • Muscle Weakness
  • Muscle Pain
  • Spasticity
  • Depression
  • Anxiety
  • Insomnia/Sleeplessness
  • Fatigue
  • Chemo Lines on Nails/Easily Breaking Nails
  • Diarrhea
  • Constipation
  • Abdominal Bloating
  • Nausea
  • Stomach Issues
  • Acid Reflux/GERD
  • Sore Throat
  • Mouth Sores/Throat Sores
  • Headaches
  • Urinary Tract Infections/Cystitis
  • Swelling of Feet
  • Overall Fluid Retention
  • Mild Fever (Most Common in First Month Home)
  • Rash from Bactrim
  • Reactions to Antivirals and Antibiotics
  • Upper Respiratory Infections
  • Easy Bruising
  • Dry Eyes
  • Ear Infections
  • Sinus Infections
  • Weight Gain (Often Thyroid Related)
  • Weight Loss (From Chemo)
  • Difficulty Stomaching Food (Usually in First Month Home)
  • Menopause
  • Infertility
  • Neck Pain From CVC, Nerve or Muscle Related
  • All Types of Body Pain

Less Common Side Effects of HSCT (1-10% of Patients)

  • Thyroid Issues
  • Secondary Autoimmune Disease
  • Gluten/Dairy/Lactose/Food Intolerances
  • Shingles
  • AVN/Avascular Necrosis (5-10% will develop this because of IV steroids in general)
  • C-Diff Infections
  • Teeth/Dental Issues (Breakage/Tooth Loss)
  • Osteoporosis
  • Skin Cancer (Chemo Raises Risk)
  • Blood Clots/DVTs (In Legs or from CVC)
  • Sepsis
  • Stomach Ulcers
  • GAVE/Watermelon Stomach
  • Mucositis
  • Diabetes-Type 2 (From Steroids Given During Treatment)
  • Other Cancers

Rare Side Effects of HSCT (Less Than 1%)

  • EBV Activation
  • CMV Activation
  • Death
  • ITP (Low Platelets)
  • Engraftment Syndrome
  • Adrenal Failure
  • Kidney Failure
  • Liver Failure
  • Gallbladder Issues
  • Heart Issues
  • Lung Issues
  • Other Medical Related Issues

I’m sure I am missing a fair number of side effects, but these are the most common that I have seen mentioned on the veteran’s groups.  The list is not meant to scare anyone, but it is good for people to really be able to see what could happen afterwards so they can be prepared.  These however can be hit and miss with people, some people have almost the whole list happen to them, others only have a few.  It really depends on the person.  Much like treatment itself, some people get through it with no issues at all, others get sick and really struggle with it.

I think the biggest side effect issues that really affect recovery are depression and anxiety.  Both of these issues are fairly common and can be brutal for those that have them.  If you have battled these issues pre-HSCT they probably will get way worse afterwards.  If you struggle with this at all, please seek medical help and take meds if needed.

The one side effect that is often downplayed on the groups that does occur in 5-10% of all patients after HSCT is AVN.  It almost always leads to people needing joints replaced, most frequently hips and shoulders.  AVN in general can occur in anyone who ever had a dose of IV steroids, but the higher dosages used in HSCT certainly don’t help.  I know that it can be claimed that HSCT won’t cause this issue, but given so many people need joints replaced 1-2 years after having HSCT done, it does appear that the HSCT procedure could be behind it all, especially given it has also occurred in those with PPMS who never had IV steroids prior to HSCT.  It does typically seem to happen more in older patients, although it is hard to say if younger patients may have that issue develop as they get older as well.  Pretty much everyone still is happy they have had HSCT even though they have needed joints replaced.

Also one side effect that I do have listed that is rarely discussed is blood clots/DVTs.  Now if you actually read papers on this topic you will see that about 40-65% of everyone who had a CVC for 10+ days will develop a partial DVT around their line.  For most people this doesn’t cause any issues at all and the DVT will eventually be reabsorbed by the body and it’s not a big deal.  But I had a partial DVT in my jugular caused by the CVC and it was causing me some pain so I did blood thinners for a while and that at least made the pain go away and my body should eventually reabsorb what is left of the clot. Others have had this happen as well and also did blood thinners to help with the issue.  There have been a couple of people who had more severe DVTs in their jugular veins that got infected and took longer to resolve, so if you ever have any pain/swelling in the area where your line was, get a vein doppler/ultrasound done to ensure there isn’t a major problem.  DVTs/blood clots are more common in the legs after HSCT.  Not necessarily from the procedure itself, but perhaps from the plane ride home or from sitting/lying around more after you get home from the procedure.  So if you are prone to blood clots that may be something to be proactive about when you get home.

Thyroid issues also seem to be an issue for some after HSCT.  It’s hard to say exact percentages on this because a lot of people 2+ years out now are finding out they have thyroid issues.  Basically if something seems out of whack with your body, like MS symptoms are bad and not going away, get a full thyroid panel done. These issues are easily fixed with a pill.

The rare side effects are ones that people don’t like to discuss, but they can and do happen.  One of my stemmie sisters suffered from Engraftment Syndrome shortly after returning home.  The symptoms of that mimic sepsis, but often involve rashes.  Her doctors initially treated her for sepsis and she almost died and spent a lot of time in the hospital before they figured out it was Engraftment Syndrome and treated her appropriately for that.  Treatment for that involves doses of steroids over a period of time. Her case was severe, but there have been others that had a minor case of this happen that was treated at the start and had to be on steroids for a while.  So it’s things like this that people need to research ahead of time, because your doctors at home may not understand some of these conditions and you may have to advocate for yourself.  Another patient has suffered adrenal failure from the large doses of steroids they received over the course of their MS along with HSCT.  Sometimes that goes away with treatment for others it means a lifetime of taking medication.

Like I said at the start, this list isn’t meant to scare anyone away from HSCT, it’s more to educate people on what they could have happen to them afterwards.  The rare side effects are exactly that, rare, but as people have found out they can and do happen.  None of them expected those things to happen to them, but they did. And with the common side effects it’s just good to be prepared for what you may encounter when you get home, since some of them can hit you out of the blue and you always see people posting on the veteran’s groups asking if something happening to them is normal after HSCT.  So it’s good to be prepared ahead of time for whatever may come along.

 

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About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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