Good afternoon, I would like to request the results of the tests conducted with the drug Ferriprox on patients with SS. The reason for this request is that I have recently been diagnosed with this condition, and here in Brazil, there is limited knowledge regarding treatment with iron chelators. Therefore, I intend to use the results of these tests to appeal to my health plan for coverage of the drug.

Thank you very much.



>> This is the latest study we completed with Ferriprox, describing the benefits we observed:



https://pubmed.ncbi.nlm.nih.gov/29285884/



This article is free of charge to download and share.

I've read a great deal of the Q/A and I'm asking if ibuprofen is okay for headaches. My husband has recently been diagnosed with extensive SS in the cerebellum and has been advised not to take ibuprofen. Other prescribed medications aren't proving effective for him. Codeine simply knocks him out, and he doesn't like that. He says ibuprofen is the only thing that helps.



>> Ibuprofen is probably fine. Ibuprofen makes platelets a little less sticky, and therefore the implication is that it could worsen any internal bleeding from sickle cell disease (SCD). Surgeons advise avoiding ibuprofen before surgery to prevent bleeding complications. However, no one has tested ibuprofen in SCD, so it's unclear whether this extrapolation is valid. Moreover, every medication decision involves balancing benefits and side effects, so if ibuprofen is the only effective option, it might still be the best choice.

My son has a new symptom; he's started stuttering when talking, and he looks confused. He's had SS for 21 years and is quite advanced. Is this stuttering related to SS? He's also had 6 strokes as a child.



>> It’s possible that this could be related to SS. If SS involves the language centres of the brain, I suppose this could happen. It could also be due to damage from the previous strokes. Or maybe a combination. The other possibility to consider is a small seizure related to the previous strokes. The reason I raise that possibility is that after small seizures, people feel confused.

I had the Pfizer vaccine in January 2021. Three weeks later, I couldn't move my right arm; it was frozen, and I could not move it at all. Since then, I've had a lot of things happen. I had an MRI scan and was diagnosed with SS. They think the vaccine caused an allergy for me. Am I able to fly with SS?



>> This is an unusual way to receive a diagnosis of SS. I suspect it had nothing to do with the Pfizer shot or the frozen shoulder. However, if it resulted in an MRI, at least now you are aware of the SS and can endeavour to address it before it manifests symptoms. There are various types of superficial siderosis – including both benign and detrimental varieties – so it's imperative to seek expert advice in your specific case. Indeed, it is safe to fly with SS.

Dear Dr. Levy,

The use of Botox has been brought to my attention.

I underwent brain surgery for meningioma in 2006. A fluid sac developed in place of the benign tumour. Bleeding was discovered in 2009.

Since the operation, the muscles of the shoulder have been very tight, as well as the large neck muscle next to the scar. Neither stretching nor exercise has helped, or if it did, only for a day or two. My therapists have been cautious in handling the shoulder and neck treatment due to concerns about affecting the fluid bag. The left shoulder pulls the body forward and to the left. The tightness in the neck area may be one reason for the bleeding, although it is not evident on the MRI. A physiatrist now recommends the use of Botox injections to release the stiffness. I feel okay about using them on the shoulders, but are there any reasons not to use them on the neck muscles?

My SS symptoms (which started to deteriorate two years ago, even though the SS has spread widely in the brain) include partial hearing loss, ataxia, balance issues, and double vision in the left eye (which is alleviated three times with prism). I also experience bladder problems (where Botox has been used, although I have not yet decided whether to try it). I have been using Ferriprox since the beginning of June. I have just turned 70 years old.



>> Botox can be helpful in relieving muscle tension. The downside of Botox is that it may weaken those same muscles. In the bladder, Botox helps prevent spasms and leakage, but excessive use can result in urinary retention. The positive aspect of Botox is that it always wears off. It could take a few weeks to months, but it’s never permanent. So, I do encourage my patients to try Botox when experts suggest it could be helpful.